Alison McAndrew

Moving the Agenda Forward for Cancer Patient Navigation: Understanding Volunteer and Peer Navigation Approaches

Across Canada, individuals diagnosed with cancer have identified concerns about access to services before, during, and following treatment, highlighting a very real uncertainty that exists about where to turn for information and assistance. Cancer patient navigation programs are emerging as effective interventions, well-equipped to meet these patients’ diverse needs. While many provinces have initiated professionally led navigation services, little is known about the potential for volunteer-led navigation. This article highlights pilot programs in British Columbia, Ontario, and Newfoundland, where volunteers are engaged as lay or peer providers of cancer patient navigation services. By describing the recruitment, training, and role of the navigators within each program, the paper underscores the capacity for unique programs to work within current care frameworks across distinct communities. These programs provide an innovative approach to overcoming barriers and augmenting access to supportive care for cancer patients and their family members.

A Performance Measurement Tool for Cancer Patient Information and Satisfaction

Cancer programs need to monitor their performance related to providing patient information. A new measurement tool was designed to gather indicator data concerning the importance of selected information topics and satisfaction with what information they had received. Based on a mixed sample of 540 cancer patients, the reliability of the importance and satisfaction scales were acceptable (Cronbach’s alpha 0.89 and 0.92, respectively). The newly designed Cancer Information Importance/Satisfaction Scale is a reliable measure and can be easily applied as a performance indicator.

Patient and Staff Assessment of an Audiovisual Education Tool for Head and Neck Radiation Therapy

The purpose of this study was to understand and compare patient and staff perceptions of a video-based preparatory education tool for head and neck radiotherapy. Patients and staff completed a questionnaire assessing their perceptions of whether the education tool was relevant, clear, complete and reassuring. Staff rated the videos accuracy and anticipated impact on future patient information needs. Demographic information was collected. Open-ended questions were used to elicit additional feedback. Quantitative responses from 50 patients and 48 staff were very positive and not significantly different between the two groups. Content analysis of the qualitative data provided insight into the information and approaches valued by patients and staff and how these differed. Staff members were more critical of the production quality and completeness of information related to procedures and treatment side effects. Patients valued seeing procedures acted out and desired more information about what these experiences would feel like and how to engage in self-care. Although staff-driven development may be an effective method of designing the content and approach of a preparatory education video, care should be taken to consider differences between patient and staff perceptions of information needs.

Perspectives from older adults receiving cancer treatment about the cancer-related information they receive

Objective: Cancer patients have reported that information plays a significant role in their capacity to cope with cancer and manage the consequences of treatment. This study was undertaken to identify the importance older adults receiving cancer treatment assign to selected types of cancer-related information, their satisfaction with the cancer-related information they received, and the barriers to effective information provision for this age group. Methods: This study was conducted in two phases with separate samples. Six hundred and eighty-four older cancer patients receiving treatment completed a standardized survey and 39 completed a semi-structured interview to gather perspectives about cancer-related information. Data were analyzed for 65-79 years and 80+ year groups. Results: Information topics about their medical condition, treatment options, and side effects of treatment were rated as most important by the older cancer patients. Women assigned a higher importance ratings than men to information overall (t = 4.8, P < 0.01). Although participants were generally satisfied with the information, they received many described challenges they experienced in communicating with health care professionals because of the medical language and fast pace of speaking used by the professionals. Conclusions: The older cancer patients in this study endorsed the same topics of cancer-related information as most important as has been reported in studies for other age groups. However, this older group recommended that, during their interactions with older individuals, health care professionals use fewer medical words, speak at a slower pace, and provide written information in addition to the actual conversation.

Understanding the full breadth of cancer-related patient costs in Ontario: a qualitative exploration

ObjectiveThis research informs existing work by examining the full scope of out-of-pocket costs and lost income, patients’ private insurance behaviors, and their overall management of finances during their cancer treatment. The intent was to gain a deeper understanding of patient circumstances and the related costs.MethodsParticipant qualitative interviews were conducted in person during outpatient clinic visits or by telephone and were recorded between June 2011 and July 2012. Interviews were transcribed verbatim and subjected to a descriptive qualitative analysis. The research team collaborated early in the process (after three subjects were enrolled) to develop a preliminary coding framework. The coding framework was modified to incorporate additional emerging content until saturation of data was evident. Transcripts were coded using the qualitative software NVivo version 9.0.ResultsFifteen patients agreed to participate in the study and 14 completed the interview (seven breast, three colorectal, two lung, and two prostate). Consistent with existing published work, participants expressed concerns regarding expenses related to medications, complementary/alternative medicines, devices, parking and travel. These concerns were exacerbated if patients did not have insurance or lost insurance coverage due to loss of work. Although many acknowledged in hindsight that additional insurance would have helped, they also recognized that at the time of their diagnoses, it was not a viable option. Previously unidentified categorical costs identified in this study included modifications to housing arrangements or renovations, special clothing, fitness costs and the impact of an altered diet.ConclusionWe confirmed the results of earlier Canadian quantitative work. Additionally, cost categories not previously explored were identified, which will facilitate the development of an improved and more comprehensive quantitative questionnaire for future research. Many patients indicated that supplemental health insurance would have made their cancer journey less stressful, highlighting existing gaps in the government funded health care system.

Évaluation de Picking up the Pieces, un atelier destiné aux survivantes

On developpe, a mesure que grandit le nombre de survivants du cancer, un bassin toujours plus grand d’information sur l’incidence a long terme du cancer et de son traitement. Cancer de l’ovaire Canada (COC) a aborde les besoins cernes des femmes ayant recu un traitement pour le cancer de l’ovaire et a mis au point un programme d’ateliers destine aux survivantes et intitule Picking Up the Pieces [Recoller les morceaux]. Cet article decrit l’evaluation de l’atelier tel qu’il a ete offert a 170 survivantes dans le cadre de huit seances donnees a l’echelle du Canada. Les sondages imprimes et les entrevues detaillees revelaient que les participantes avaient trouve l’atelier d’une tres grande utilite concernant la validation de leurs experiences en matiere d’adaptation a titre de survivantes, les liens qu’il leur permettait d’etablir avec d’autres survivantes et un reseau de soutien ainsi que les outils pratiques qu’il leur fournissait afin de les aider a aller de l’avant et a vivre la vie qu’elles envisageaient pour ellesmemes. Les infirmieres en oncologie occupent une position ideale pour encourager les femmes a assister aux ateliers concus pour les survivantes. En outre, ce programme pourrait servir de modele et etre adapte pour d’autres populations de patients atteints de cancer.