Development and validation of the Short-Form Survivor Unmet Needs Survey (SF-SUNS).

PURPOSE: The Survivor Unmet Needs Survey (SUNS) is one of the only unmet needs measures that was developed and evaluated utilising a population-based sample of cancer survivors. At 89 items, the current scale is quite burdensome. The current study aimed to develop a valid and reliable short version of this survey. METHODS: A heterogeneous sample of 1,589 cancer survivors, aged 19 years or over at diagnosis, diagnosed with a histologically confirmed cancer in the previous 12 to 60 months, completed the SUNS. Using these data, we employed a combined theoretical and statistical method of reducing the number of items in the SUNS. The shortened survey was examined for construct validity, internal consistency, discriminant validity and floor and ceiling effects. RESULTS: Fifty-nine items were removed. Construct validity closely reflected the original structure of the SUNS. However, all items from the Emotional health and Relationships domains loaded onto one factor. Cronbach's alpha for the final four domains were 0.85 or above, demonstrating strong internal consistency. Intra-class correlations of the three domains from the original survey (Financial concerns, Information and Access and continuity of care) and shortened survey were high (>0.9). Discriminant validity illustrated the short-form SUNS' ability to discriminate between those who had recently received treatment and those who had not. CONCLUSIONS: This study describes the development and psychometric evaluation of the short-form SUNS (SF-SUNS). Future studies should confirm the test-retest reliability and predictive validity of the SF-SUNS utilising large, independent, population-based samples of cancer survivors.

Health care provider communication: an empirical model of therapeutic effectiveness.

BACKGROUND: Patients who are facing life-threatening and life-limiting cancer almost invariably experience psychological distress. Responding effectively requires therapeutic sensitivity and skill. In this study, we examined therapeutic effectiveness within the setting of cancer-related distress with the objective of understanding its constituent parts. METHODS: Seventy-eight experienced psychosocial oncology clinicians from 24 health care centers across Canada were invited to participate in 3 focus groups each. In total, 29 focus groups were held over 2 years, during which clinicians articulated the therapeutic factors deemed most helpful in mitigating patient psychosocial distress. The content of each focus group was summarized into major themes and was reviewed with participants to confirm their accuracy. Upon completion of the focus groups, workshops were held in various centers, eliciting participant feedback on an empirical model of therapeutic effectiveness based on the qualitative analysis of focus group data. RESULTS: Three primary, interrelated therapeutic domains emerged from the data, forming a model of optimal therapeutic effectiveness: 1) personal growth and self-care (domain A), 2) therapeutic approaches (domain B), and 3) creation of a safe space (domain C). Areas of domain overlap were identified and labeled accordingly: domain AB, therapeutic humility; domain BC, therapeutic pacing; and domain AC, therapeutic presence. CONCLUSIONS: This empirical model provides detailed insights regarding the elements and pedagogy of effective communication and psychosocial care for patients who are experiencing cancer-related distress.

Addressing Complementary and Alternative Medicine Use Among Individuals With Cancer: An Integrative Review and Clinical Practice Guideline.

Complementary and alternative medicine (CAM) use is common among individuals with cancer, but many choose not to discuss CAM with health-care providers (HCPs). Moreover, there is variability in the provision of evidence-informed decision making about CAM use. A clinical practice guideline was developed to standardize how oncology HCPs address CAM use as well as to inform how individuals with cancer can be supported in making evidence-informed decisions about CAM. An integrative review of the literature, from inception to December 31, 2018, was conducted in MEDLINE, EMBASE, PsychINFO, CINAHL, and AMED databases. Eligible articles included oncology HCPs' practice related to discussing, assessing, documenting, providing decision support, or offering information about CAM. Two authors independently searched the literature, and selected articles were summarized. Recommendations for clinical practice were formulated from the appraised evidence and clinical experiences of the research team. An expert panel reviewed the guideline for usability and appropriateness and recommendations were finalized. The majority of the 30 studies eligible for inclusion were either observational or qualitative, with only 3 being reviews and 3 being experimental. From the literature, 7 practice recommendations were formulated for oncology HCPs regarding how to address CAM use by individuals with cancer, including communicating, assessing, educating, decision coaching, documenting, active monitoring, and adverse event reporting. It is imperative for safe and comprehensive care that oncology HCPs address CAM use as part of standard practice. This clinical practice guideline offers directions on how to support evidence-informed decision making about CAM among individuals with cancer.

Facilitating online support groups for cancer patients: the learning experience of psycho-oncology clinicians.

OBJECTIVE: Counsellor familiarity and engagement with technology-mediated communication represents an important factor in the ability to implement support programs to cancer patients. This study describes the experiences of a cohort of expert psycho-oncology counsellors who learned to facilitate online support groups (OSGs) and identifies the important elements of their learning experience that led to their engagement. PROCEDURE AND METHOD: Six psycho-oncology counsellors were trained to facilitate OSGs and later facilitated OSGs in their own practice context. They subsequently reflected on and discussed their experiences with OSGs over time: in a panel discussion within 6 months of training, and in two focus groups. A participatory method was used to describe and interpret key elements of the learning process. RESULTS AND DISCUSSION: Three themes of the counsellors' learning experience emerged: immersion in experiential learning, perceptions of clinical value and benefit, and overcoming challenges with adapted skills. Counsellors described components of their experiential learning: co-facilitating online cancer support groups with an expert, debriefing online, and participating in an online peer supervision group, as critical to their becoming engaged. Despite initial challenges, the counsellors learned new skills, and adapted known clinical skills, to the text-only environment. CONCLUSION: With appropriate training and practice over time, counsellors familiar with delivering face-to-face support groups to cancer patients became skilled and engaged in leading OSG's for cancer patients. Learning to facilitate OSGs shifted practice by significantly expanding the scope of services they were able to provide their patients and has implications for expanding access to support services.

Psychometric properties of cancer survivors' unmet needs survey.

PURPOSE: This study aims to develop a psychometrically rigorous instrument to measure the unmet needs of adult cancer survivors who are 1 to 5 years post-cancer diagnosis. "Unmet needs" distinguishes between problems which survivors experience and problems which they desire help in managing. METHODS: The survey was developed from a comprehensive literature review, qualitative analysis of the six most important unmet needs of 71 cancer survivors, review of the domains and items by survivors and experts, cognitive interviews and a pilot test of 100 survivors. A stratified random sample of 550 cancer survivors, selected from a population-based Cancer Registry, completed a mailed survey to establish reliability and validity. RESULTS: The final 89-item Survivors Unmet Needs Survey (SUNS) has high acceptability, item test-retest reliability and internal consistency (Chronbach's alpha 0.990), face, content and construct validity. Five subscales measure Emotional Health needs (33 items, 19.4% of variance), Access and Continuity of Care (22 items, 15.1%), Relationships (15 items, 12.1%), Financial Concerns (11 items, 10.3%) and Information needs (eight items, 8.1% of the variance). CONCLUSIONS: This instrument has strong psychometric properties and is useful for determining the prevalence and predictors of cancer survivors' unmet needs across types of cancer, length of survivorship and socio-demographic characteristics. Use of the SUNS will enable more effective targeting of programmes and services and guide policy and health planning decisions. RELEVANCE: This study is an important step toward evidence-based planning and management of problems which the growing survivor population requires assistance in managing.

An exploration of the patient navigator role: perspectives of younger women with breast cancer.

PURPOSE/OBJECTIVES: To delineate the role of the oncology patient navigator, drawing from the experiences and descriptions of younger women with breast cancer. RESEARCH APPROACH: Interpretive, descriptive, qualitative research design. SETTING: Participants' homes, researcher's home, and via telephone, all in Winnipeg, Manitoba, Canada. PARTICIPANTS: 12 women aged 50 years or younger who were diagnosed with breast cancer within the last three years. METHODOLOGIC APPROACH: Face-to-face semistructured interviews explored patient experiences with the cancer care system, including problems encountered, unmet needs, and opinions about the functions of the patient navigator role. The audio-recorded interviews were transcribed and data were broken down and inductively coded into four categories. Constant comparative techniques also were used during analysis. FINDINGS: The role of the oncology patient navigator included two facets: "Processual facets," with the subthemes assigned to me at diagnosis, managing the connection, mapping the process, practical support, and quarterbacking my entire journey; and "Personal qualities: The essentials," with the subthemes empathetic care tenor, knowing the cancer system, and understanding the medical side of breast cancer. CONCLUSIONS: Despite the tremendous effort directed toward enhancing care for younger women undergoing treatment for breast cancer, gaps continue to exist. Younger women with breast cancer require a care approach providing ongoing dialogue, teaching, and emotional support from the point of diagnosis through treatment, including transitions of care within the oncology setting and back to their primary care practitioner. INTERPRETATION: Oncology nurse navigators are well positioned to provide patients with anticipatory guidance from diagnosis to the end of treatment.

Talking with text: communication in therapist-led, live chat cancer support groups.

CancerChatCanada is a pan-Canadian initiative with a mandate to make professionally led cancer support groups available to more people in Canada. Although online support groups are becoming increasingly popular, little is known about therapist-led, synchronous groups using live chat. The purpose of this study was to generate a rich descriptive account of communication experiences in CancerChatCanada groups and to gain an understanding of processes associated with previously-reported benefits. We used interpretive description to analyze interview segments from 102 patients, survivors and family caregivers who participated in CancerChatCanada groups between 2007 and 2011. The analysis yielded four inter-related process themes (Reaching Out From Home, Feeling Safe, Emotional Release, and Talking With Text) and one outcome theme (Resonance and Kinship). The findings extend previous research about text-only online support groups and provide novel insights into features of facilitated, live chat communication that are valued by group members.

The Patient Dignity Inventory: applications in the oncology setting.

BACKGROUND: The Patient Dignity Inventory (PDI) is a novel 25-item psychometric instrument, designed to identify multiple sources of distress (physical, functional, psychosocial, existential, and spiritual) commonly seen in patients who are terminally ill. It was also designed to help guide psychosocial clinicians in their work with patients. While its validity and reliability have been studied within the context of palliative care, its utility in clinical settings has not as yet been examined. PURPOSE: The purpose of this study was to determine how psychosocial oncology professionals would use the PDI with within their practice and what utility it might have across the broad spectrum of cancer. METHODS: Between October 2008 and January 2009, psychosocial oncology clinicians from across Canada were invited to use the PDI to determine their impressions of this approach in identifying distress and informing their practice. RESULTS: Ninety participants used the PDI and submitted a total of 429 feedback questionnaires detailing their experience with individual patients. In 76% of instances, the PDI revealed one or more previously unreported concerns; in 81% of instances, clinicians reported that the PDI facilitated their work. While it was used in a wide range of circumstances, clinicians were more inclined to apply the PDI to patients engaged in active treatment or palliation, rather than those in remission, having recently relapsed, or newly diagnosed. Besides its utility in identifying distress, the PDI enabled clinicians to provide more targeted therapeutic responses to areas of patient concern. CONCLUSIONS: While this study suggests various clinical applications of the PDI, it also provides an ideal forerunner for research that will directly engage patients living with cancer.

Continuity of care of colorectal cancer survivors at the end of treatment: the oncology-primary care interface.

PURPOSE: This study examines at a population level how colorectal cancer (CRC) survivors evaluate the continuity and quality of their follow-up care after treatment, particularly for those in the care of a primary care provider (PCP). METHODS: A survey was mailed in 2010 to all individuals in Manitoba, Canada diagnosed in 2008/2009 with stage II and III CRC. Respondents were asked to identify the main provider(s) of their follow-up care. Those indicating a PCP completed the Patient Continuity of Care Questionnaire (PCCQ), which assesses continuity of care upon discharge from hospital to community. Quality of life (QOL) on the Functional Assessment of Cancer Therapy--Colorectal (FACT-C) and the Illness Intrusiveness Rating Scale was collected as well as demographic information. Descriptive statistics and regression analyses were utilized. RESULTS: The response rate was 246/360 or 68.3 %. Most participants were Caucasian with a mean age of 70 and 18 months from diagnosis. A single "main provider" of follow-up care was named by 47 %, most frequently a FP or oncologist, but a majority (53 %) indicated multiple providers. Twenty-four combinations of providers were described. The 106 respondents (43.1 %) who named a PCP as a main provider completed the PCCQ and reported high scores on its five subscales. In multivariate analysis, lower FACT-C QOL scores (OR 2.72, CI 1.12-6.57) and male gender (OR 2.82, CI 1.11-7.18) predicted poorer evaluations of continuity of care. Concern was highest regarding sexual function, body image, fatigue, impact on work and recreation, and bowel control, and in those who were younger or with rectal cancer. CONCLUSIONS: The organization of CRC follow-up care between providers is complex and variable, but patients followed by PCPs evaluate their transitions of care after treatment favorably. Specific clinical issues and higher risk groups are identified and may benefit from specific attention from all providers. IMPLICATIONS FOR CANCER SURVIVORS: Most CRC survivors are satisfied when their primary care provider becomes responsible for follow-up care. However, this is less true for those who are having more challenges in recovery. These survivors should ensure that information transfer and support services are identified that will smooth this transition.

The cancer support person's unmet needs survey: psychometric properties.

BACKGROUND: A rigorous psychometric methodology was used to develop a measure of unmet needs for cancer survivors' principal support persons. Principal support person was defined as "someone you can count on and who helps you with your needs." METHODS: Development of the domains and the items followed an extensive literature review, iterative input from support persons, and consultation with health professionals and front-line staff working with cancer survivors and their supports. Cognitive interviews helped clarify item wording, and the draft questionnaire was reappraised by a group of support persons. The questionnaire was reduced to 90 items and sent to a stratified, random sample of cancer survivors selected from a provincial population-based cancer registry. They were asked to give the survey to their support person. RESULTS: The resulting 78-item Support Person Unmet Needs Survey has high acceptability, item test-retest reliability, internal consistency (Chronbach alpha = .990), and face, content, and construct validity. It captures 6 domains of unmet needs and accounts for 73.5% of total variance: Information and Relationship Needs (27 items, 22.1% of variance), Emotional Needs (16 items, 15.2%), Personal Needs (14 items, 14.0%), Work and Finance (8 items, 8.8%), Health Care Access and Continuity (9 items, 8.6%), and Worries About Future (4 items, 4.8%). CONCLUSIONS: This instrument will be of use where there is an interest in examining the impact of cancer not only on cancer survivors but also on their identified principal support persons.