Role of patient and family engagement in quality improvement for pediatric surgery.

In recent decades, the role of quality improvement (QI) in pediatric surgery has grown substantially. Patient and family engagement can help to maximize the impact of QI by enhancing safety and patient outcomes. Yet, broader, systematic efforts to actively involve patients and families in QI initiatives remain a persistent gap in pediatric surgery. To address this gap, we propose an agenda centered on three key goals for future quality improvement efforts: (1) building partnerships with patients and their families; (2) expanding the use of patient-reported outcomes (PROs) and novel, cross-disciplinary research methods; and (3) engaging patients and families consistently across all stages of pediatric surgical care. Fulfilling this agenda will be essential in shifting our mindset to view QI as a collective that involves patients, families, clinicians, and payers in continuous, system-wide opportunities to evaluate and improve care. Actively listening to and collaborating with patients and families may also help renew our focus on narrowing the gap between current practice and the best possible practice for children undergoing surgery.

A randomized clinical trial of granulocyte macrophage colony stimulating factor mouthwash for oral mucositis in head and neck cancer.

PURPOSE: Oral mucositis (OM) is a significant problem for patients with head and neck cancer (HNC). The purpose of this double-blind, randomized clinical trial (RCT) was to evaluate the effectiveness of the granulocyte macrophage colony stimulating factor (GM-CSF) mouthwash compared to Salt and Soda mouthwash for both the prevention (prior to onset of OM) and treatment (beginning at the onset of OM to its healing) of radiation therapy (RT)-induced OM. METHODS: A total of 91 patients with HNC were randomized to receive: GM-CSF throughout both the prevention and treatment phases (GG group); Salt and Soda throughout both phases (SS group) or Salt and Soda during the prevention phase followed by GM-CSF at the onset of OM (SG group). Three groups were compared on the occurrence and grades of OM, functional status, pain, chewing, and swallowing during and after RT. RESULTS: No significant differences were found in the occurrence and grades of OM in the patients who used GM-CSF vs. Salt and Soda in the prevention phase. In addition, no differences were seen among the three groups in functional status, pain, chewing, and swallowing during and after RT. CONCLUSION: Given that GM-CSF was no more effective than Salt and Soda mouthwash for the prevention or treatment of OM, the readily available and cheaper mouthwash can be used at considerable cost savings.

Forming a Parent And Clinician Team (PACT) in a cohort of healthy children.

BACKGROUND: Engaging parents in child health research can facilitate choosing relevant research questions, recruiting participants who reflect the diversity of large communities, and disseminating study results to communities in accessible ways. MAIN BODY: Primary care well-child visit systems present a foundation for trusting relationships between families and clinicians, lending itself well to a system where health research is embedded into the delivery of health care. We provide an example of a practice-based research network called TARGet Kids!, which is a longitudinal cohort study of children from birth to adolescence. Researchers and clinicians have partnered with parents of children participating in TARGet Kids! to ensure child health research is centred on family values and preferences. A Parent And Clinician Team (PACT) was formed to set research priorities, co-design research protocols, troubleshoot issues, and communicate research to knowledge users. CONCLUSION: This partnership will facilitate child health research which is feasible, relevant and inclusive for improving children's health care and public health policy.

Including parents as partners in child health research can lead to choosing relevant research questions, recruiting children to participate who represent the general population, and sharing study results with communities. The structure of primary care offered to children presents an opportunity for building trusting relationships between families and clinicians, which may encourage parents and health care providers to participate in child health research. We provide an example of an ongoing study called TARGet Kids!, which includes children from birth to adolescence who attend regular health care visits. Researchers and clinicians have partnered with parents of children participating in TARGet Kids! to ensure child health research is centered on family values and preferences. A Parent And Clinician Team (PACT) was formed to set research priorities, design research studies together, troubleshoot issues, and communicate research findings back to health care providers, families, and policy makers. This partnership will lay a foundation for child health research which is practical, relevant to families and inclusive for improving children's health care and public health policy.

New Data on Access to Mental Health and Addictions Services and Home and Community Care.

As the population ages, more Canadians need home care to help manage their health conditions and live safely at home. For Canadians of all ages, timely access to mental health and addictions services is an area of growing concern. The impact of the COVID-19 pandemic and its strain on health system resources have further highlighted the need to improve services in these areas. The Canadian Institute for Health Information (CIHI) is working with governments across Canada to bridge data gaps, develop indicators and publicly report results as part of a collective effort to improve access in these two sectors. Results for three new indicators were released by CIHI in 2020.

Parent Perspectives on Readiness for Discharge Home after Neonatal Intensive Care Unit Admission.

OBJECTIVE: To explore the parent perspective on discharge home from the neonatal intensive care unit (NICU). STUDY DESIGN: We interviewed parents of NICU graduates with a range of demographic characteristics and medical complexities to explore parent perspectives on readiness for discharge. Interviews were transcribed and coded by a 6-member team. We performed content analysis to identify themes and develop a family-centered conceptual framework around readiness for NICU discharge. RESULTS: We interviewed a total of 15 parents who experienced NICU stays with 18 infants. Parents who have experienced NICU discharge have a spectrum of needs that evolve from the time the child is in the NICU, at time of discharge, and at home afterward. These needs consistently centered around 5 themes-communication, parent role clarity, emotional support, knowledge sources, and financial resources. CONCLUSIONS: Parents described many ways the system could have better prepared them and connected them with essential resources. Summarizing the voices of the parents who participated in this study, we have compiled a series of practical recommendations for clinicians to use in daily practice to help parents feel prepared and confident for the transition home from the NICU.

Healthy Lifestyle Behaviors of Breast Cancer Survivors.

The purpose of this secondary analysis was to describe the extent to which women with breast cancer, who participated in a randomized control trial on exercise, adopted American Cancer Society (ACS) guidelines for healthy lifestyle behaviors. Women in the study exercised during cancer treatment and for 6 months after completion of treatment. The sample included 106 women, average age 50.7 years (SD = 9.6). Adherence to guidelines for 5 servings of fruits and vegetables ranged from 36% (n = 28) to 39% (n = 36). Adherence with alcohol consumption guidelines was 71% (n = 28) to 83% (n = 30). Adherence with meeting a healthy weight ranged from 52% (n = 33) to 61% (n = 31). Adherence with physical activity guidelines ranged from 13% (n = 30) to 31% (n = 35). Alcohol and healthy weight guidelines were followed by more than half of the participants, but physical activity and dietary guidelines were followed by far fewer women. Further prospective clinical studies are indicated to determine whether interventions are effective in producing a healthy lifestyle in cancer survivors.

Upper extremity bioimpedance before and after treadmill testing in women post breast cancer treatment.

Research on the effect of cardiorespiratory (CR) exercise on upper extremity (UE) limb volume is limited in women with breast cancer-related lymphedema (BCRL). The aim of this study was to compare changes in UE volume immediately following a symptom-limited CR treadmill test in women with and without BCRL. As part of a cross-sectional study, 133 women post unilateral BC treatment completed symptom-limited treadmill testing. Bioimpedance spectroscopy (BIS) was used to measure UE resistance before and immediately following treadmill testing. Resistance ratios >1 (unaffected side/affected side) indicate greater volume in the affected limb. T-tests and repeated measures ANOVA were performed to evaluate differences between and within groups. Mean age was 56.2 years (SD 9.4); BMI was 26.13 kg m(-2) (SD 5.04). For women with previously diagnosed BCRL (n = 63), the resistance ratio was 1.116 (SD 0.160) pre-treadmill and 1.108 (SD 0.155) post-treadmill. For women without BCRL (n = 70), the resistance ratio was 0.990 (SD 0.041) pre-treadmill and 1.001 (SD 0.044) post-treadmill. Resistance ratios for women with BCRL were higher than those for women without BCRL at both time points (main effect of group: p < 0.001). No main effects were found for time (p = 0.695). A statistically significant effect was found for the time-by-group interaction (p = 0.002). 78% of the women with BCRL wore a compression garment during testing. Following testing, the women with BCRL demonstrated a non-statistically significant decrease in the resistance ratio, suggesting an immediate decrease in interlimb volume difference. The women without BCRL demonstrated an increase in the resistance ratio.

Comparisons of exercise dose and symptom severity between exercisers and nonexercisers in women during and after cancer treatment.

CONTEXT: Although numerous studies of the efficacy of exercise are reported, few studies have evaluated changes in characteristics of exercise dose in women with cancer both during and after cancer treatment. OBJECTIVES: To describe the characteristics of exercise dose (i.e., frequency, duration, and intensity) and evaluate for differences in symptom severity (i.e., fatigue, sleep disturbance, depression, and pain) between women who did and did not exercise during and after cancer treatment. METHODS: In a sample of 119 women, two groups were classified: exercisers and nonexercisers. Exercisers were defined as women who met specific criteria for frequency (three times per week), duration (20 minutes/session), intensity (moderate), and mode (aerobic). Nonexercisers were defined as women who did not meet all these criteria. Evaluation of exercise dose was completed at baseline (T1: the week before chemotherapy cycle 2), at the end of cancer treatment (T2), and at the end of the study (T3: approximately one year after the T1 assessment) using self-report exercise questionnaires. RESULTS: Approximately 50% of the participants exercised during treatment and 70% exercised after treatment. At T1, exercisers had lower total fatigue, lower behavioral and sensory subscale fatigue scores, and lower depression scores (P = 0.038) than nonexercisers. No significant differences in sleep disturbance or pain were found between groups. At T2, exercisers had lower cognitive/mood subscale fatigue and depression scores than nonexercisers (P = 0.047). At T3, no significant differences were found between groups in any symptom severity scores. CONCLUSION: Both during and after cancer treatment, achieving or maintaining exercise guideline levels were met by most patients. Further study is needed to examine the link between exercise dose and symptom severity.

Differences in sleep disturbance parameters between oncology outpatients and their family caregivers.

PURPOSE: This study compared the occurrence rates for and severity ratings of sleep disturbance in patient-family caregiver (FC) dyads. PATIENTS AND METHODS: In total, 102 dyads were recruited from two radiation therapy (RT) departments. Patients and their FCs completed the Pittsburgh Sleep Quality Index (PSQI) and the General Sleep Disturbance Scale (GSDS) and wore wrist actigraphs to obtain subjective and objective measures of the occurrence and severity of sleep disturbance at the initiation of RT. Match paired t tests were used to evaluate for dyadic differences. RESULTS: No differences were found in the occurrence of clinically significant levels of sleep disturbance between patients and their FCs that ranged between 40% and 50% using subjective and objective measures. Few differences were found in the severity of any of the sleep-wake parameters between patients and FCs using both the subjective and objective measures of sleep disturbance. CONCLUSION: The findings from this study suggest that patients with cancer and their FCs experience similar levels of sleep disturbance and that both groups could benefit from interventions that aim to promote restful sleep. In addition to routine and systematic assessment of sleep disturbance by oncology clinicians, interventions are needed that take into account the specific needs of the patient and the FC as well as the potential for partners' sleep patterns to influence one another.

Nutritional symptom and body composition outcomes of aerobic exercise in women with breast cancer.

The purpose of this secondary analysis was to examine the nutritional symptoms and body composition outcomes of aerobic exercise in women with breast cancer. A single-blind clinical trial, randomized to tailored Pro-Self(©) exercise during and after chemotherapy, after chemotherapy only, or no Pro-Self (usual care). One hundred women, average age 49.9 years (SD = 9.6), participated. Mild taste changes, nausea, constipation, and anorexia were experienced by 47% to 55% at baseline and end of treatment but diminished post treatment. No group differences were found in total nutritional symptoms or symptom severity. Intervention group participants maintained lean body mass; control group participants had nonsignificant lean body mass loss. Issues related to self-report, protocol adherence, and generalizability limit findings. Aerobic exercise is useful in achieving healthy weight and body composition, but the intensity and duration achieved during cancer treatment and recovery did not produce significant changes.

Identification of latent classes in patients who are receiving biotherapy based on symptom experience and its effect on functional status and quality of life.

PURPOSE/OBJECTIVES: to identify subgroups of patients receiving biotherapy with pain, fatigue, sleep disturbance, and depression and to determine functional status and quality of life differences between subgroups. DESIGN: a descriptive, prospective, cohort study design. SETTING: internet-based survey. SAMPLE: 187 patients with cancer receiving biotherapy. METHODS: pain intensity, Piper Fatigue Scale, General Sleep Disturbance Scale, Center for Epidemiological Studies-Depression, Karnofsky Performance Scale, and the Multidimensional Quality of Life Scale-Cancer were used at two time points one month apart (T1 and T2). Latent profile analysis identified subgroups. MAIN RESEARCH VARIABLES: biotherapy, symptoms, functional status, and quality of life. FINDINGS: At T1 (N = 187), five patient subgroups were identified, ranging from subgroup 1 (mild fatigue and sleep disturbance) to subgroup 5 (severe on all four symptoms). At T2 (N = 114), three patient subgroups were identified, ranging from subgroup 1 (mild pain, fatigue, and sleep disturbance without depression) to subgroup 3 (mild pain, moderate fatigue, and sleep disturbance with severe depression). At each time point, the patient subgroup with the most severe symptoms showed significantly lower functional status and quality of life. CONCLUSIONS: as with other cancer treatments, biotherapy can be divided into similar patient subgroups with four prevalent symptoms. Subgroups of patients differ in functional status and quality of life as a result of symptom severity. IMPLICATIONS FOR NURSING: clinicians should assess and identify patients with severe levels of the four prevalent symptoms and offer appropriate interventions. Future study is needed to investigate the factors that contribute to symptom severity and to examine the occurrence of symptom clusters that may place patients at increased risk for poorer outcomes.

The effects of pain, gender, and age on sleep/wake and circadian rhythm parameters in oncology patients at the initiation of radiation therapy.

UNLABELLED: To date, no studies have evaluated for differences in subjective and objective measures of sleep disturbance in oncology outpatients with and without pain. This descriptive study, recruited 182 patients from 2 radiation therapy (RT) departments at the time of the patient's simulation visit. Approximately 38% of the sample reported moderate to severe pain (ie, worst pain intensity of 6.2 ± 2.4). After controlling for age, patients in pain reported worse sleep quality and more sleep disturbance using the Pittsburgh Sleep Quality Index. With the General Sleep Disturbance Scale, patients in pain reported poorer sleep quality, increased use of sleep medications, and more daytime sleepiness. In addition using an objective measure of sleep disturbance (ie, actigraphy), significant gender × pain interactions were found for sleep onset latency, percentage of time awake at night, wake duration, total sleep time, and sleep efficiency. While no differences were found in female patients, males in pain had worse scores than males without pain. Findings from this study suggest that pain and sleep disturbance are prevalent in oncology outpatients and that a patient's age and gender need to be considered in any evaluation of the relationship between pain and sleep. PERSPECTIVE: The effects of pain on subjective and objective sleep parameters appear to be influenced by both patients' age and gender.