Factors That Determine the Experience of Transition to an Inpatient Palliative Care Unit for Patients and Caregivers: A Qualitative Study.

Objective: Transitions in care settings near the end of life can present challenges to patients and families, especially when there are also adjustments in level of care and illness trajectory. In this study, we explored what factors influenced how patients and family caregivers experienced a transition to an inpatient Palliative Care Unit (PCU). Methods: This qualitative study was conducted at a PCU in Toronto, Canada. Semi-structured interviews were held with 29 participants (14 patients and 15 family caregivers) during their time on the PCU. Data was analyzed through an iterative process of constant comparison to generate themes. The recruitment process continued to the point of thematic saturation. Results: Five themes were identified that represented the participants' experiences in transitioning to the PCU: Being prepared, Feeling supported, Coming to terms with end of life issues, Dealing with uncertainty, and Continuity of care. Conclusions: Our findings highlight the need for clear and iterative communication with patients and family caregivers during the transition to a PCU. Identification and consideration of the common themes involved in the experience of transfer to PCU can help guide future practice and improve the experience of patients and families during transitions at the end of life.

Cancer patients' experiences with immune checkpoint modulators: A qualitative study.

BACKGROUND: Minimal qualitative data exist on the experiences of cancer patients treated with immune checkpoint inhibitors or costimulatory antibodies. Understanding the day to day experiences of patients being treated with immune checkpoint modulators, and how these relate to their health-related quality of life, can inform future research and lead to better clinical decision-making and care. We report here the first in depth qualitative study to consider patients' diverse and complex experiences with immune checkpoint modulators, with a focus on side effects and how these impact daily life. METHODS: This single-center qualitative study was based on focus groups and semistructured interviews. Patients who were being treated or who had been treated with immune checkpoint modulators within the last year for a range of cancer diagnoses were recruited. Interpretive description informed our inductive, iterative approach to analysis. RESULTS: Eight themes were identified, characterizing the complexity of these patients' lived experiences: major categories of side effects experienced and how they impacted patient well-being; the heterogeneous nature of side effects experienced; living with uncertainty; reframing the meaning and severity of SEs; focus on survival, hope, and being positive; acceptance and adaptation; feeling supported; and faith in medical innovation. Throughout their accounts, participants highlighted the profound impact that immune checkpoint modulators had on their daily lives. CONCLUSION: This is the first in-depth qualitative study into patient accounts of their experiences of treatment with immune checkpoint modulators, related side effects, and how it impacted their daily lives. This research is an integral initial step in developing an instrument that will assess treatment-related side effects in patients treated with this form of therapy.

Development of the Functional Assessment of Cancer Therapy-Immune Checkpoint Modulator (FACT-ICM): A toxicity subscale to measure quality of life in patients with cancer who are treated with ICMs.

BACKGROUND: Patients with cancer who are treated with immune checkpoint modulators (ICMs) have their health-related quality of life (HRQOL) measured using general patient-reported outcome (PRO) tools. To the authors' knowledge, no instrument has been developed to date specifically for patients treated with ICMs. The objective of the current study was to develop a toxicity subscale PRO instrument for patients treated with ICMs to assess HRQOL. METHODS: Input was collected from a systematic review as well as patients and physicians experienced with ICM treatment. Descriptive thematic analysis was used to evaluate the qualitative data obtained from patient focus groups and interviews, which informed an initial list of items that described ICM side effects and their impact on HRQOL. These inputs informed item generation and/or reduction to develop a toxicity subscale. RESULTS: Focus groups and individual interviews with 37 ICM-treated patients generated an initial list of 176 items. After a first round of item reduction that produced a shortened list of 76 items, 16 physicians who care for patients who are treated with ICMs were surveyed with a list of 49 patient-reported side effects and 11 physicians participated in follow-up interviews. A second round of item reduction was informed by the physician responses to produce a list of 25 items. CONCLUSIONS: To the authors' knowledge, this 25-item list is the first HRQOL-focused toxicity subscale for patients treated with ICMs and was developed in accordance with US Food and Drug Administration guidelines, which prioritize patient input in developing PRO tools. The subscale will be combined with the Functional Assessment of Cancer Therapy-General (FACT-G) to form the FACT-ICM. Prior to recommending the formal use of this PRO instrument, the authors will evaluate its validity and reliability in longitudinal studies involving substantially more patients.

Development of a Functional Assessment of Chronic Illness Therapy item library and primary symptom list for the assessment of patient-reported adverse events associated with immune checkpoint modulators.

AIM: To develop a comprehensive item library of patient-reported, immunotherapy-related adverse events (irAEs) that draws from and expands on the Functional Assessment of Chronic Illness Therapy (FACIT) Measurement System. METHODS: Literature review and iterative expert input. Based on a literature review of irAEs, we developed a framework of immunotherapy classes and their associated symptoms. Clinical experts then reviewed iterations of symptom summaries and item maps linked to the immunotherapy framework. Experts provided content review and feedback was shared across experts until consensus was reached. The iterative process facilitated creation of a Primary Symptom List associated with immune checkpoint modulators (ICMs), drawn from the larger set of symptoms. Existing FACIT items were mapped to the symptom list, and new items were written as needed to create the item library. RESULTS: The full item library of irAEs is comprised of 239 items, covering 142 unique symptoms across 75 inflammatory reactions/immune conditions. A subset of 66 items comprises a Primary Symptom List considered most common/relevant to ICM treatment. This includes gastrointestinal, skin, pulmonary, neurologic, musculoskeletal, and multiple miscellaneous and constitutional symptoms. CONCLUSION: The FACIT Immunotherapy Item Library is a compilation of 239 self-report items that capture the wide range of AEs experienced by people receiving immune treatments. A subset of 66 items comprises a Primary Symptom List meant for ICM therapy. Use of items selected from this library is encouraged in clinical research and clinical practice evaluation.

The Affordability and Accessibility of Ontario's Publicly Funded IVF Program: A Survey of Patients.

OBJECTIVE: On December 21, 2015, the Province of Ontario created the Ontario Fertility Program to fund one cycle of in vitro fertilization (IVF) to improve IVF affordability and access for Ontarians below age 43. The objective of this study was to determine whether the Program was meeting this goal, based on the experiences of participating patients. METHODS: Participation in an electronic survey was invited through posters and brochures placed within the waiting rooms of all 25 IVF clinics providing funded IVF in Ontario and by a survey link placed on websites focused on fertility issues. RESULTS: The survey was carried out at the end of the second year of the Program (September to December 2017), with 514 participants completing >75% of it. Program strengths were noted as follows: decreases in financial inequities of family building for the infertile; lowering of the opportunity cost of accessing IVF; and destigmatizing and raising public awareness of infertility as a legitimate medical condition. Weaknesses were as follows: lack transparency and consistency in clinics' patient prioritization schemes; clinic concentration in cities leading to geographic inequities in access; and high ancillary costs being financially burdensome. The following opportunities were suggested: funding of more than one IVF cycle and its supporting medications; standardization of prioritization schemes; and tying Program access to means testing. CONCLUSION: Patients strongly support the Program and noted improved IVF affordability, but the Program's reliance on existing private clinics for treatment provision has meant unresolved geographic inequities and inconsistent prioritization schemes. Because this is the first Program study of patients' experience, the results will help policymakers determine areas to re-evaluate for continued or increased funding and opportunities to collaborate with health care providers and clinic owners to improve provision and access.

"Like being put on an ice floe and shoved away": A qualitative study of the impacts of opioid-related policy changes on people who take opioids.

AIMS: To characterize the impacts of policies intended to improve opioid prescribing and prevent opioid-related overdose and death on individuals who take opioids. METHODS: We conducted a qualitative study using focus groups with 48 adults aged 18 years and over who had experience taking opioids. Participants were recruited from across Ontario, Canada, and separate focus groups were held for individuals taking opioids for chronic pain and individuals taking opioids for other reasons. We drew upon stigma theory to interpret participants' accounts. RESULTS: Following analysis and interpretation, we generated three themes describing the impacts of recently implemented opioid-related policies and harm reduction interventions on people who take opioids: 'propagating stigma: addict as dominant status', 'loss of autonomy' and 'producing/reproducing structural vulnerabilities'. Specifically, participants characterize an environment in which 'addict' has become the dominant social identity ascribed to people who take opioids, and where relationships with providers have become strained as participants perceive themselves to be powerless when decisions regarding opioid use and pain management are made. These shifts in identity and relationships had negative repercussions when help-seeking and exposed larger vulnerabilities related to poverty and criminalization. CONCLUSIONS: The introduction of opioid-related policies had unintended consequences for people who take opioids. Potential measures for mitigating these consequences include ensuring that people who take opioids are involved in all facets of policy development and implementation, integrating peer workers into the care of these individuals, and respecting patient agency when decisions about pain management and opioid use are made.

Victims of road rage: a qualitative study of the experiences of motorists and vulnerable road users.

OBJECTIVE: To gain an in-depth understanding of road rage incidents from the victims' perspectives. METHODS: The data consisted of 30- to 60-min in-depth semistructured phone interviews with 29 self-identified victims of road rage. Twenty of the participants were in a motor vehicle, whereas 9 were pedestrians/cyclists. A qualitative Grounded Theory approach was used to inductively code and analyze the transcripts. RESULTS: Victims reported a correlation between their vulnerability and the perceived intensity/severity of the road rage incidents. The most vulnerable victims (pedestrians and cyclists) were the least likely to view road rage incidents as a random event and the most likely to feel that they were specifically targeted. Road rage incidents tended to evolve more rapidly when there was a greater real or perceived power imbalance between the victims and perpetrators. The most vulnerable victims were the most likely to have long-term physical and mental health consequences from the incident, and to significantly modify their behavior after the incident. CONCLUSIONS: Our analysis suggests that issues of victim vulnerability play a major role in determining the intensity, severity, and psychological consequences of road rage incidents. This seems particularly true for the most vulnerable of road users, such as pedestrians and cyclists.

Estimating prevalence of anxiety and mood disorder in survey data using the GHQ12: Exploration of threshold valuesa

Background and Objectives: Our study explored the validity of different threshold values on the 12-item version of the General Health Questionnaire (GHQ12) forestimating the prevalence of anxiety and mood disorders (AMD) in Ontario population survey data.Methods: Data were drawn from the 2003, 2004 and 2006 cycles of the CAMH Monitor(N = 7,126), an ongoing general population survey of Ontario adults aged 18 and older,which includes the GHQ12. The concordance of different threshold values on the GHQ12for determination of AMD with a criterion based on individuals who were prescribed eitheranti-anxiety or anti-depressant drugs in the past 12 months and who reported 14 ormore mentally unhealthy days in the past 30 days was examined using receiver operator characteristic (ROC) analysis.Results: Concordance between the GHQ12 determination of AMD and the criterionmeasure reached “moderate” levels. ROC analysis revealed an area under the curve (AUC)of 0.89. At a GHQ12 threshold value of 4, the specificity and sensitivity values obtained were 0.92 and 0.71, respectively. Also at that value, the estimated prevalence of AMD wasnearly identical to that seen in recent Canadian studies using the CIDI.Conclusions: These analyses suggest that the GHQ12 may be suitable for providing aproxy measure of AMD for epidemiological and surveillance purposes. A threshold score of 4 seems to be most suitable for these purposes when using Canadian data (AU)

Anxiety and mood disorders and cannabis use.

BACKGROUND: Cannabis use has been linked to anxiety and mood disorders (AMD) in clinical cases, but little research on this relationship has been reported at the epidemiological level. OBJECTIVES: We examined the relationship between self-reported frequency of cannabis use and risk for AMD in the general Ontario adult population. METHODS: Data were based on the CAMH Monitor survey of Ontario adults from 2001 to 2006 (n = 14,531). AMD was assessed with the 12-item version of the General Health Questionnaire (GHQ12). Frequency of cannabis use within the past year was grouped into five categories: No use (abstainer), less than once a month but at least once a year, less than once a week but at least once a month, less than daily but at least once a week, almost every day to more than once a day. Logistic regression analysis of AMD and cannabis use was implemented while controlling for demographics and alcohol problems. RESULTS: AMD was most common among heavy cannabis users (used almost every day or more) (18.1%) and lowest for abstainers (8.7%). Compared to abstainers, the risk of AMD was significantly greater for infrequent cannabis users (OR = 1.43) and heavy cannabis users (OR = 2.04) but not for those in between. CONCLUSION: These data provide epidemiological evidence for a link between both light and heavy cannabis use and AMD. SCIENTIFIC SIGNIFICANCE: Recognizing the comorbidity of heavy cannabis use and AMD should facilitate improved treatment efforts. Our results also suggest the possibility that, for some individuals, AMD may occur at relatively low levels of cannabis use.