Towards the assessment of quality of life in patients with disorders of consciousness.

PURPOSE: To generate foundational knowledge in the creation of a quality-of-life instrument for patients who are clinically diagnosed as being in a vegetative or minimally conscious state but are able to communicate by modulating their brain activity (i.e., behaviourally nonresponsive and covertly aware). The study aimed to identify a short list of key domains that could be used to formulate questions for an instrument that determines their self-reported quality of life. METHODS: A novel two-pronged strategy was employed: (i) a scoping review of quality-of-life instruments created for patient populations sharing some characteristics with patients who are behaviourally nonresponsive and covertly aware was done to compile a set of potentially relevant domains of quality of life; and (ii) a three-round Delphi consensus process with a multidisciplinary panel of experts was done to determine which of the identified domains of quality of life are most important to those who are behaviourally nonresponsive and covertly aware. Five expert groups were recruited for this study including healthcare workers, neuroscientists, bioethicists, quality-of-life methodologists, and patient advocates. RESULTS: Thirty-five individuals participated in the study with an average response rate of 95% per round. Over the three rounds, experts reached consensus on 34 of 44 domains (42 domains were identified in the scoping review and two new domains were added based on suggestions by experts). 22 domains were rated as being important for inclusion in a quality-of-life instrument and 12 domains were deemed to be of less importance. Participants agreed that domains related to physical pain, communication, and personal relationships were of primary importance. Based on subgroup analyses, there was a high degree of consistency among expert groups. CONCLUSIONS: Quality of life should be a central patient-reported outcome in all patient populations regardless of patients' ability to communicate. It remains to be determined how covertly aware patients perceive their circumstances and quality of life after suffering a life-altering injury. Nonetheless, it is important that any further dialogue on what constitutes a life worth living should not occur without direct patient input.

Evaluation of Factors Associated With Unmet Needs in Adult Cancer Survivors in Canada.

Importance: Understanding the challenges faced by an increasing number of cancer survivors can guide the development and implementation of effective survivorship care models. Objective: To identify the physical, emotional, and practical concerns and associated unmet needs reported by cancer survivors. Design, Setting, and Participants: This cross-sectional survey study obtained data from the Experiences of Cancer Patients in Transitions Study of the Canadian Partnership Against Cancer, in collaboration with cancer agencies in the 10 Canadian provinces, that was disseminated in 2016. This analysis included only adult survivors aged 30 years or older who underwent chemotherapy, radiation therapy, surgical treatment, or a combination of these therapies for breast, prostate, colorectal, melanoma, or hematological cancer within the past 1 to 3 years. Data synthesis and quality assessment were conducted in 2017. Data analysis was completed in July 2019. Main Outcomes and Measures: The outcomes were the (1) quantification of the magnitude and multiplicity of the physical, emotional, and practical concerns of adult survivors of breast, colorectal, prostate, melanoma, or hematological cancer; (2) exploration of the magnitude of associated unmet needs; and (3) identification of patient-, treatment-, and cancer-specific factors associated with the reporting of unmet needs. Results: Overall, 10 717 adult respondents were included (5660 [53%] female and 6367 [60%] aged ≥65 years). The median number of concerns per respondent was 6 (interquartile range [IQR], 3-10). Among respondents with concerns, help was sought for a median of 2 (IQR, 0-4) concerns. Unmet needs were reported for a median of 4 (IQR, 2-7) concerns. Emotional concerns were reported by 8330 respondents (78%), physical concerns by 9236 respondents (86%), and practical concerns by 4668 respondents (44%). At least 1 unmet need was reported by 7033 survivors (84%) with emotional concerns, 7475 (81%) with physical concerns, and 3459 (74%) with practical concerns. Age, sex, annual income, marital status, geographic location, language, and treatment type were significant factors associated with unmet needs. Survivors of melanoma cancer had a significantly higher likelihood of reporting unmet emotional needs (odds ratio [OR], 1.75; 95% CI, 1.17-2.61; P = .01), whereas survivors of prostate (OR, 0.60; 95% CI, 0.43-0.84; P < .001) and hematological (OR, 0.70; 95% CI, 0.50-0.99; P = .04) cancers were significantly less likely to report unmet needs for physical concerns when compared with breast cancer survivors. Involvement of the general practitioner combined with the oncologist in providing care was associated with a significantly lower likelihood of reporting unmet emotional (OR, 0.78; 95% CI, 0.62-1.00; P = .05) and practical (OR, 0.72; 95% CI, 0.55-0.94; P = .01) needs. Conclusions and Relevance: The extent of unmet needs among cancer survivors found in this study suggests the need for enhancements in survivorship care, including better awareness of the realities of survivorship, earlier interventions for emerging concerns among survivors, and greater integration of cancer programs and primary care for more seamless transitions.