A Systematic Review of the Relationship between Social Isolation and Physical Health in Adults.

Background: According to the World Health Organization, social isolation, particularly of older adults, is a public health issue endangering the well-being of individuals, families, and communities. Social isolation affects health through biological, behavioral, and psychological pathways and is associated with physical and psychological/emotional well-being, increases morbidity and mortality rates, and lowers quality of life. Purpose: This systematic review examined the relationship between social isolation and physical health, including subjective and objective dimensions, and factors that influence this relationship in adults. Methods: This systematic review examined six electronic databases covering the field of health and human services and included results from 1 January 2017 to 10 March 2023 with key terms including adult social connection or social isolation coupled with health, physical, psychological, emotional, mental, or behavioral. The initial search yielded 925 research articles across all databases and was narrowed to 710 when the decision was made to focus on social isolation and physical health. Covidence was used throughout the retrieval and appraisal process, as provided in a PRISMA flow diagram. Twenty-four studies that scored 90 or above in the appraisal process were included in the systematic review. Results: The studies represented included seven studies conducted in the United States and seventeen studies conducted internationally. Regarding study design, twenty-three studies were quantitative, one was qualitative, and one was mixed methods. The majority of quantitative studies were correlational in design with nine being longitudinal. The majority of studies were based on large national data sets representing in total 298,653 participants aged 50 and older. The results indicate that social isolation is related to increases in inflammatory biomarkers associated with diseases, all-cause mortality, lower expectations of longevity, and frailty. In addition, social isolation was associated with cognitive decline and disruptions in sleep. Poor oral health increased social isolation. The results further indicated that decreased physical performance/function and a decline in physical activity were associated with social isolation, as well as decreased overall physical health, poor health behaviors, and self-care, and decreased health-related quality of life. Further research is warranted to examine the possible bidirectionality of these relationships and possible mediating, moderating, or confounding variables. Implications: Future research is needed to explore the biological and behavioral pathways in which social isolation negatively impacts physical health. Going forward, studies are needed that move beyond descriptive, exploratory methods and integrate data from qualitative and mixed-method designs that will inform the development and testing of a conceptual framework related to social isolation and health. By advancing the science behind social isolation, comprehensive interventions can be identified and tested with implications at the individual, family, community, and societal levels to reduce social isolation, particularly among adults, and improve health and quality of life.

The need for a holistic guide to prevent and manage radiation dermatitis in patients' with breast cancer: a case report.

Background: Radiation therapy (RT) is often indicated in the treatment of breast cancer following breast conserving surgery or mastectomy, yet carries a 95% risk of radiation dermatitis (RD) of varying severity within 1 to 4 weeks of treatment. The burdens of RT include skin breakdown, pain, psychological distress, and functional challenges. Given limited patient education regarding the prevention and management of RD, a Clinician Guide and Evidence-based Skin Care Plan were developed to offer a holistic, patient-centered approach to care, with optimal RD prevention and management strategies to enhance patients' quality of life and survival. Case Description: M.R. (a pseudonym) was a 64-year-old Caucasian woman, diagnosed with invasive adenocarcinoma of the left breast, underwent a lumpectomy with a positive sentinel node biopsy. Within 4 weeks of surgery, she received RT, 5 days a week for 6 weeks. Within 1 week, the skin of her breast and axilla was red and hyperpigmented with skin damage progressing to dryness, itching and flaking. At this point, she asked the Radiology team for a skin care protocol to prevent or reduce RD, but limited information was provided. Ultimately, her skin cracked, blistered and crusted, with the development of a skin infection. She expressed the significant impact on her physical, emotional and functional well-being, and lamented about the shortfalls in her care, specifically the limited availability of information to prevent and reduce RD. Conclusions: In order to prevent and minimize RD and to promote health, this case study highlights the need for an all-encompassing, patient-centered approach to care, which may be achievable by implementation of a Clinician Guide and an Evidence-based Skin Care Plan. Highlighted in the Clinician Guide are the importance of developing a trustworthy patient-clinician relationship, emotional support, social support, education, weekly physical assessments, assessment of overall adjustment to a cancer diagnosis and treatment, promotion of patient engagement and self-care, reinforcement of healthy lifestyles, and patient adherence to the Evidence-based Skin Care Plan during RT. These strategies are expected to decrease the physical, mental, and functional difficulties associated with RT, avoid treatment delays or discontinuation, and increase the likelihood of disease-free survival and quality of life.

The Similarities and Differences of Nurse-Postoperative Patient Dyads' Attitudes, Social Norms, and Behaviors Regarding Pain and Pain Management.

PURPOSE: Pain is an expected symptom in surgical patients, despite advances in pharmacology, surgical procedures, and perioperative care. The aim of this study was to examine the similarities and differences between nurse-postoperative patient dyads of the same or differing cultures/ethnicities with regard to perceptions, social norms, and behaviors related to pain and pain management. DESIGN: This was a descriptive qualitative study. METHODS: The sample consisted of six nurses (2 Hispanic, 2 Black, 2 Caucasian) and 12 patients of the same and different culture/ethnicity than their nurse) on a postoperative unit within 48 hours of surgery. A structured interview guide was developed to explore the attitudes, social norms, and behaviors of nurses related to pain and pain management, and a separate interview guide was developed for postoperative patients. All transcripts were analyzed and coded using Carini's principles. FINDINGS: Nurses used the pain scale to quantify pain intensity but did not conduct a comprehensive pain assessment. Nurses were concerned about opioid side effects and addiction and hesitated to provide opioids after the first postoperative day. Patients expected complete and immediate pain relief, with no worry about short-term opioid use. Patients did not believe that culture played a role in their care, but nurses were more comfortable caring for patients from the same cultural background. The use of complementary and nonpharmacologic pain management techniques was not well known by nurses and patients, but should be used in conjunction with medications. CONCLUSIONS: Nursing education stresses cultural competence, but nurses emphasize "treating all patients the same," which creates a cognitive dissonance, with implications for education. Nurses should conduct a comprehensive pain assessment to inform pain management and nonpharmacologic and complementary therapies should be available on the postoperative unit.

Surgical Patients' Attitudes, Norms, and Behaviors Regarding Pain.

The study purpose was to examine the attitudes, norms, and behaviors of surgical patients of different ethnic/cultural backgrounds regarding pain and pain management. The study was a descriptive qualitative study guided by the Theory of Planned Behaviors and the Theory of Transcultural Nursing. The sample consisted of 12 postoperative patients on a surgical observation unit within 48 hours of surgery. The results indicated the majority of patients expected to feel pain after surgery and wanted pain to be treated completely. However, overall, pain indicates that something is wrong. Patients expect nurses to assess their pain frequently, view the pain site, and to act promptly to relieve pain, otherwise they feel ignored. Patients had limited knowledge about the pharmacological treatments, and prefer to combine medications with non-pharmacologic and complementary therapies. The clinical implications indicate the expectation of a comprehensive postoperative pain assessment, and education regarding pharmacological, non-pharmacological, and complementary pain treatments.

Promoting Comfort: A Clinician Guide and Evidence-Based Skin Care Plan in the Prevention and Management of Radiation Dermatitis for Patients with Breast Cancer.

Patients with breast cancer may be offered adjuvant radiation therapy (RT) after surgery. Up to 95% of these patients develop radiation dermatitis (RD) during or following RT. Randomized clinical trials and other literature provide evidence that RD can be prevented or reduced. The aim of this article is to propose a Clinician Guide and Evidence-based Skin Care Plan to prevent and/or reduce radiation dermatitis and promote the comfort of breast cancer patients receiving RT. As an integrative review, the databases searched were CINAHL and Medline, using the key terms: breast cancer, skin care, radiation, radiation therapy, radiotherapy, radiation dermatitis, and radiation skin reaction, prevention, and management. Search criteria included English language, full text, published between 2012 through 2020, and peer-reviewed. The search yielded 320 articles. Relevant articles were evaluated using the Quality Assessment Tool (QAT), and highly rated articles were selected to be included in the review of literature. The outcomes were the development of a Clinician Guide to offer holistic, patient-centered care and an Evidence-based Skin Care Plan. The research literature supports a standard skin care regimen, along with use of an emollient cream to the treatment area, use of deodorants depending on patient preferences, and application of a topical steroid cream daily throughout treatment and two weeks post RT. Clinician's weekly assessments of patients offers therapeutic support and ensures optimal skin care during and post-RT. The comfort of breast cancer patients receiving RT requires the best level of evidence regarding the efficacy of interventions, coupled with clinician's judgement, and patient's preferences and wishes. The clinician-patient relationship is essential in addressing the physical, emotional, social, spiritual, and functional challenges associated with a cancer diagnosis and adjunctive radiation therapy to improve long-term survival.

Understanding Attitudes, Social Norms, and Behaviors of a Cohort of Post-Operative Nurses Related to Pain and Pain Management.

Despite advances in surgical techniques and peri-operative care, pain is a significant symptom post-operatively. The purpose of this study was to examine the attitudes, social norms, and behaviors of a cohort of nurses of various ethnic and cultural backgrounds regarding pain and pain assessment and management. The design was a descriptive qualitative study guided by Theory of Planned Behavior and the Theory of Transcultural Nursing. The sample included six registered nurses (RNs) (two Hispanic, two African American, and two Caucasian), along with patients of the same and different cultural and ethnic backgrounds in the post-operative unit within 48 h of surgery. The nurses' results indicated that nurses assess pain severity and patient treatment preferences yet do not conduct a comprehensive pain assessment and have limited knowledge of non-pharmacologic and complementary pain therapies. Despite knowledge of the patient's pain history, tolerance, and cultural background, the nurses believed that "all patients should be treated the same" and were concerned about the use of opioids beyond the first 24-48 h post-operatively due to the risk of addiction and professional ramifications related to opioid administration. The conclusions are that ongoing education is needed regarding comprehensive pain assessment and pharmacologic, non-pharmacologic, and complementary pain therapies during the post-operative period. Discussion is needed regarding the importance of diversity and equity as it relates to cultural competence within the context of pain assessment and management to provide patient-centered individualized care.

An Introduction to Skin as an Interface: Implications for Interprofessional Collaboration and Whole-Person Care.

GENERAL PURPOSE: To increase health care professionals' awareness and perceptions of the skin as one of the largest body organs with multidimensional aspects and significant implications for interprofessional collaboration in whole-person care. TARGET AUDIENCE: This continuing education activity is intended for physicians, physician assistants, nurse practitioners, and nurses with an interest in skin and wound care. LEARNING OBJECTIVES/OUTCOMES: After participating in this educational activity, the participant should be better able to:1. Apply physiologic and integumentary knowledge to assessing common skin variations and problems.2. Summarize the results of the authors' literature review of the evidence regarding the emotional, psychosocial, cultural, and spiritual aspects of skin health and disorders. ABSTRACT: The skin reflects not only a person's physical state of health, but also the dynamic interplay of emotional and cultural influences. This article will increase health practitioner understanding of the skin and skin assessment by highlighting its multidimensional aspects and significant implications for interprofessional collaboration in whole-person care. Through a multidimensional assessment of the skin, practitioners can better understand the health story of each patient and intervene holistically to improve overall well-being and quality of life.

A Review of the Complex Role of Family Caregivers as Health Team Members and Second-Order Patients.

In Palliative Care, the unit of care is the patient and their family. Although members of the health care team often address the family caregiver's opinions and concerns, the focus of care remains on the needs of the patient. The readiness and willingness of the family caregiver is often overlooked as they are expected to assume a complex caregiving role. When family caregivers are not intellectually or emotionally prepared or physically capable, the caregiver is at high risk for serious health issues and cognitive, emotional, and physical decline particularly as caregiving extends over time. Family caregivers are often a neglected and at-risk population. Illustrated through the use of a case study, this article addresses the complex role of family caregivers, as both health team members and second-order patients. It emphasizes the importance of family assessment and interventions to balance the burdens and benefits of family caregiving and protect caregivers' health and well-being.

Conceptualizing Interprofessional Teams as Multi-Team Systems-Implications for Assessment and Training.

UNLABELLED: SGEA 2015 CONFERENCE ABSTRACT (EDITED). Evaluating Interprofessional Teamwork During a Large-Scale Simulation. Courtney West, Karen Landry, Anna Graham, and Lori Graham. CONSTRUCT: This study investigated the multidimensional measurement of interprofessional (IPE) teamwork as part of large-scale simulation training. BACKGROUND: Healthcare team function has a direct impact on patient safety and quality of care. However, IPE team training has not been the norm. Recognizing the importance of developing team-based collaborative care, our College of Nursing implemented an IPE simulation activity called Disaster Day and invited other professions to participate. The exercise consists of two sessions: one in the morning and another in the afternoon. The disaster scenario is announced just prior to each session, which consists of team building, a 90-minute simulation, and debriefing. Approximately 300 Nursing, Medicine, Pharmacy, Emergency Medical Technicians, and Radiology students and over 500 standardized and volunteer patients participated in the Disaster Day event. To improve student learning outcomes, we created 3 competency-based instruments to evaluate collaborative practice in multidimensional fashion during this exercise. APPROACH: A 20-item IPE Team Observation Instrument designed to assess interprofessional team's attainment of Interprofessional Education Collaborative (IPEC) competencies was completed by 20 faculty and staff observing the Disaster Day simulation. One hundred sixty-six standardized patients completed a 10-item Standardized Patient IPE Team Evaluation Instrument developed from the IPEC competencies and adapted items from the 2014 Henry et al. PIVOT Questionnaire. This instrument assessed the standardized or volunteer patient's perception of the team's collaborative performance. A 29-item IPE Team's Perception of Collaborative Care Questionnaire, also created from the IPEC competencies and divided into 5 categories of Values/Ethics, Roles and Responsibilities, Communication, Teamwork, and Self-Evaluation, was completed by 188 students including 99 from Nursing, 43 from Medicine, 6 from Pharmacy, and 40 participants who belonged to more than one component, were students at another institution, or did not indicate their institution. The team instrument was designed to assess each team member's perception of how well the team and him- or herself met the competencies. Five of the items on the team perceptions questionnaire mirrored items on the standardized patient evaluation: demonstrated leadership practices that led to effective teamwork, discussed care and decisions about that care with patient, described roles and responsibilities clearly, worked well together to coordinate care, and good/effective communication. RESULTS: Internal consistency reliability of the IPE Team Observation Instrument was 0.80. In 18 of the 20 items, more than 50% of observers indicated the item was demonstrated. Of those, 6 of the items were observed by 50% to 75% of the observers, and the remaining 12 were observed by more than 80% of the observers. Internal consistency reliability of the IPE Team's Perception of Collaborative Care Instrument was 0.95. The mean response score-1 (strongly disagree) to 4 (strongly agree)-was calculated for each section of the instrument. The overall mean score was 3.57 (SD = .11). Internal consistency reliability of the Standardized Patient IPE Team Evaluation Instrument was 0.87. The overall mean score was 3.28 (SD = .17). The ratings for the 5 items shared by the standardized patient and team perception instruments were compared using independent sample t tests. Statistically significant differences (p < .05) were present in each case, with the students rating themselves higher on average than the standardized patients did (mean differences between 0.2 and 0.6 on a scale of 1-4). CONCLUSIONS: Multidimensional, competency-based instruments appear to provide a robust view of IPE teamwork; however, challenges remain. Due to the large scale of the simulation exercise, observation-based assessment did not function as well as self- and standardized patient-based assessment. To promote greater variation in observer assessments during future Disaster Day simulations, we plan to adjust the rating scale from "not observed," "observed," and "not applicable" to a 4-point scale and reexamine interrater reliability.

Palliative care: a paradigm of care responsive to the demands for health care reform in America.

Palliative care is poised to become a universally available approach to health care which addresses both the needs of patients and families experiencing serious, progressive, and life-threatening illness, and also the costs of delivering such needed services. Palliative care and hospice are part of a continuum of care with palliative care provided at any time during the illness trajectory, while hospice care is offered at the end of life. Within the context of health care reform, we believe palliative care addresses critical economic imperatives while enhancing quality of life even as death approaches. As leaders in health care, advance practice nurses, specifically, and the nursing community in general are best positioned with the knowledge, expertise, and commitment to advance the specialty of palliative care and lead the way in the reform of America's health care system.

Reclaiming life on one's own terms: a grounded theory study of the process of breast cancer survivorship.

PURPOSE/OBJECTIVES: To develop a substantive theory of the process of breast cancer survivorship. RESEARCH APPROACH: Grounded theory. SETTING: A LISTSERV announcement posted on the SHARE Web site and purposeful recruitment of women known to be diagnosed and treated for breast cancer. PARTICIPANTS: 15 women diagnosed with early-stage breast cancer. METHODOLOGIC APPROACH: Constant comparative analysis. MAIN RESEARCH VARIABLES: Breast cancer survivorship. FINDINGS: The core variable identified was Reclaiming Life on One's Own Terms. The perceptions and experiences of the participants revealed overall that the diagnosis of breast cancer was a turning point in life and the stimulus for change. That was followed by the recognition of breast cancer as now being a part of life, leading to the necessity of learning to live with breast cancer, and finally, creating a new life after breast cancer. Participants revealed that breast cancer survivorship is a process marked and shaped by time, the perception of support, and coming to terms with the trauma of a cancer diagnosis and the aftermath of treatment. The process of survivorship continues by assuming an active role in self-healing, gaining a new perspective and reconciling paradoxes, creating a new mindset and moving to a new normal, developing a new way of being in the world on one's own terms, and experiencing growth through adversity beyond survivorship. CONCLUSIONS: The process of survivorship for women with breast cancer is an evolutionary journey with short- and long-term challenges. INTERPRETATION: This study shows the development of an empirically testable theory of survivorship that describes and predicts women's experiences following breast cancer treatment from the initial phase of recovery and beyond. The theory also informs interventions that not only reduce negative outcomes, but promote ongoing healing, adjustment, and resilience over time.

The effects of psychoeducation and telephone counseling on the adjustment of women with early-stage breast cancer.

BACKGROUND: Throughout the illness trajectory, women with breast cancer experience issues that are related to physical, emotional, and social adjustment. Despite a general consensus that state-of-the-art treatment for breast cancer should include educational and counseling interventions to reduce illness or treatment-related symptoms, there are few prospective, theoretically based, phase-specific randomized, controlled trials that have evaluated the effectiveness of such interventions in promoting adjustment. PURPOSE: The aim of this study is to examine the physical, emotional, and social adjustment of women with early-stage breast cancer who received psychoeducation by videotapes, telephone counseling, or psychoeducation plus telephone counseling as interventions that address the specific needs of women during the diagnostic, postsurgery, adjuvant therapy, and ongoing recovery phases of breast cancer. DESIGN: Primary data from a randomized controlled clinical trial. SETTING: Three major medical centers and one community hospital in New York City. METHODS: A total of 249 patients were randomly assigned to either the control group receiving usual care or to one of the three intervention groups. The interventions were administered at the diagnostic, postsurgery, adjuvant therapy, and ongoing recovery phases. Analyses were based on a mixed model analysis of variance. MAIN RESEARCH VARIABLES AND MEASUREMENT: Physical adjustment was measured by the side effects incidence and severity subscales of the Breast Cancer Treatment Response Inventory (BCTRI) and the overall health status score of the Self-Rated Health Subscale of the Multilevel Assessment Instrument. Emotional adjustment was measured using the psychological well-being subscale of the Profile of Adaptation to Life Clinical Scale and the side effect distress subscale of BCTRI. Social adjustment was measured by the domestic, vocational, and social environments subscales of the Psychosocial Adjustment to Illness Scale. FINDINGS: Patients in all groups showed improvement over time in overall health, psychological well-being, and social adjustment. There were no significant group differences in physical adjustment, as measured by side effect incidence, severity, or overall health. There was poorer emotional adjustment over time in the usual care (control) group as compared to the intervention groups on the measure of side effect distress. For the telephone counseling group, there was a marked decline in psychological well-being from the adjuvant therapy phase through the ongoing recovery phase. There were no significant group differences in the dimensions of social adjustment. CONCLUSION: The longitudinal design of this study has captured the dynamic process of adjustment to breast cancer, which in some aspects and at various phases has been different for the control and intervention groups. Although patients who received the study interventions improved in adjustment, the overall conclusion regarding physical, emotional, and social adjustment is that usual care, which was the standard of care for women in both the usual care (control) and intervention groups, supported their adjustment to breast cancer, with or without additional interventions. IMPLICATIONS FOR NURSING: The results are important to evidence-based practice and the determination of the efficacy and cost-effectiveness of interventions in improving patient outcomes. There is a need to further examine adjustment issues that continue during the ongoing recovery phase. KEY POINTS: Psychoeducation by videotapes and telephone counseling decreased side effect distress and side effect severity and increased psychological well-being during the adjuvant therapy phase. All patients in the control and intervention groups improved in adjustment. Adjustment issues are still present in the ongoing recovery phase.

A comparison of death anxiety and quality of life of patients with advanced cancer or AIDS and their family caregivers.

As an existential crisis, death anxiety may create suffering and impact quality of life. Based on a sample of 101 patients (63 patients with AIDS and 38 with advanced cancer) and 79 family caregivers (43 AIDS patients' caregivers and 36 cancer patients' caregivers), this study examined the death anxiety of patients with advanced cancer and patients with AIDS and that of their family caregivers and the relationship of death anxiety and quality of life. The results indicated that AIDS patients expressed greater death anxiety than cancer patients, but death anxiety was not different among family caregivers. Both AIDS and cancer patients experienced greater death anxiety than their caregivers. Greater death anxiety was associated with lower quality of life, particularly in the psychological domain for AIDS patients. There were significant correlations between the death anxiety subscales and the quality of life subscales for family caregivers, especially for AIDS caregivers. Interventions that lessen death anxiety may enhance quality of life as death approaches, particularly for AIDS patients and their family caregivers.

Differences in physical, emotional, and social adjustment of intimate, family, and nonfamily patient-partner dyads based on a breast cancer intervention study.

PURPOSE/OBJECTIVES: To assess the degree to which postsurgical adjustment in patients with breast cancer and their partners depends on the nature of the patient-partner dyad relationship. DESIGN: Secondary data analysis from a randomized controlled trial. SETTING: Three cancer centers and one suburban community hospital in New York. SAMPLE: 205 patient-partner dyads (112 intimate-partner, 58 family-member, and 35 nonfamily-member dyads). METHODS: Mann-Whitney nonparametric comparisons and chi-square tests were used to assess dyad types on continuous and categorical variables, and a mixed model for repeated measures compared postsurgical adjustment among dyad types. MAIN RESEARCH VARIABLES: Type of patient-partner dyads and physical, emotional, and social adjustment. FINDINGS: Patients in intimate-partner dyads were younger, had greater incomes, and discovered the lump by routine mammogram as compared to family- or nonfamily-member dyads. No significant differences were observed in patients' physical or emotional adjustment. Patients with intimate partners had greater difficulty in their social and domestic environments. Partners in intimate-partner dyads had lower scores on psychological well-being, more problems in social and domestic adjustment, and less social support to promote social adjustment. CONCLUSIONS: Women with breast cancer experience successful physical and emotional adjustment whether they have intimate-partner, family-member, or nonfamily-member partners. Intimate partners are at greater risk for emotional and social adjustment issues. IMPLICATIONS FOR NURSING: When designing interventions, consideration must be given to the type of patient-partner dyad involved.

Breast cancer: education, counseling, and adjustment among patients and partners: a randomized clinical trial.

BACKGROUND: Although various forms of psychoeducation and counseling interventions have been examined among patients with a variety of diagnoses, the unique contribution of phase-specific psychoeducation and telephone counseling (TC) to the ongoing process of adjustment has not been explored among patients with breast cancer and their partners. OBJECTIVE: To conduct a randomized controlled clinical trial of phase-specific evidence-based psychoeducation and TC interventions to enhance emotional, physical, and social adjustments in patients with breast cancer and their partners. METHODS: A purposive sample of 249 patient-partner dyads were assigned randomly to one of four groups: (a) control group receiving disease management (DM), (b) standardized psychoeducation (SE), (c) TC, or (d) standardized psychoeducation plus telephone counseling (SE + TC). Data were collected at baseline, diagnostic, postsurgery, adjuvant therapy, and ongoing recovery phases measuring emotional, physical, and social adjustments. RESULTS: Patients showed poorer adjustment over time in the DM group relative to those receiving interventions on selected measures of emotional adjustment. All patients showed improvement over time in overall health and adjustment in social and vocational environments. Partners in all groups exhibited improvement over time for measures of adjustment in the social environment but no changes in psychological well-being or overall health. Partners in the TC group had poorer scores on physical symptoms compared with the SE + TC group and poorer vocational scores compared with the DM group. DISCUSSION: Findings from this study provide preliminary support for the value of phase-specific SE and TC interventions to enhance selected adjustment outcomes for patients with breast cancer and their partners.

Symptom assessment of patients with advanced cancer and AIDS and their family caregivers: the results of a quality-of-life pilot study.

This longitudinal pilot study examined differences in demographic characteristics of 101 patients with advanced illness (cancer, AIDS) and 81 Family caregivers, evaluated the reliability of the Memorial Symptom Assessment Scale for these patients and their family caregivers; obtained preliminary data regarding similarities or differences in the symptom experience oF these patients and their family caregivers and changes in symptoms over time; and identified demographic variables that may be potential covariates related to the symptom experience. All demographic variables were significantly different for patients with advanced cancer and AIDS, and their symptom experience is similar only with regard to psychologic symptoms; however, based on the Memorial Symptom Assessment Scale, cancer and AIDS patients and their family caregivers have similar symptom experiences, indicating the need for palliative care for both patients and family. Further research is needed to establish the reliability of the Memorial Symptom Assessment Scale for use with family caregivers.

Quality of life of patients with advanced cancer and acquired immune deficiency syndrome and their family caregivers.

BACKGROUND: Although definitions of palliative care include quality of life as a central concern, little research has been published about both the quality of life of patients with advanced illness and their family members, and particularly the changes in their quality of life over time. OBJECTIVES: The aims of this prospective longitudinal pilot study were to: (1) establish the reliability of multidimensional quality of life instruments based on patients with acquired immune deficiency syndrome (AIDS) and patients with cancer and caregivers; (2) identify differences in quality of life between patients with advanced AIDS and cancer, and their family caregivers with consideration of mortality, attrition, and compliance rates; and (3) examine differences in demographic variables and their potential confounding effect when measuring quality of life. METHODS: The sample included 101 patients with advanced illness (63 patients with advanced AIDS and 38 with advanced cancer) and 81 family caregivers (43 caregivers for patients with AIDS and 38 caregivers for patients with cancer). Data collection involved the monthly completion of the McGill Quality of Life Questionnaire (MQOL) for patients, and the Quality of Life Scale (QLS) for family caregivers. RESULTS: Reliability of the MQOL and QLS were established for patients with AIDS and patients with cancer and caregivers. Based on the MQOL, patients with advanced AIDS reported a lower total quality of life, and lower psychological quality of life, and a higher physical quality of life compared to patients with advanced cancer. There were no significant differences between patient groups on the one-item physical well-being subscale, or the existential well-being, and support subscales. Based on the QLS, AIDS caregivers reported greater overall quality of life, greater psychological well-being, and greater spiritual well-be- ing than cancer caregivers. There were no significant differences between AIDS and cancer caregivers with respect to physical or social well-being. From baseline entry into the study to third month of participation, there were no significant changes in total quality of life scores for patient or caregiver groups, although trends indicated a moderately high total quality of life over time for all patient and caregiver groups. Fourteen of 63 (22%) patients with AIDS patients died, while 19 of 38 (50%) patients with advanced cancer died after enrollment. Forty-six of 63 (73%) patients with advanced AIDS withdrew for various reasons other than death at some point during the 12 month time frame of the study, while 15 of 38 (39%) patients with advanced cancer withdrew. There were significant differences on all demographic variables for patients with advanced cancer and AIDS. Only religious affiliation was significantly related to quality of life for patients with AIDS, while gender was the only variable associated with quality of life for patients with cancer. There were significant differences on all demographic variables between caregivers with the exception of gender and living arrangements. Only the relationship between patients and caregivers and marital status were significantly associated with quality of life for cancer caregivers. CONCLUSIONS: In palliative care research, the challenge is to design studies that will capture changes in the domains of quality of life over time, yet will minimize participant burden and subsequent attrition rates. By measuring quality of life as an outcome variable in palliative care, health professionals can identify changes in the domains of quality of life over time for various patient populations and their family caregivers, and respond with appropriate interventions, which promote or maintain their quality of life even as death approaches.