Printed guide improves knowledge of curative, palliative, and hospice care among women with metastatic breast cancer

To the Editor:Self-management is the ability of patients along with familymembers to manage physical, psychosocial, and spiritualconsequences of their health condition(s) [1, 2]. Breastcancer survivors want to self-manage [3–7]; however, lackof knowledge about care options—curative, palliative, andhospice care—is an obstacle [8, 9]. Confusion arises becausecare options are not distinct; palliative care can be providedconcurrently with curative care and is part of hospice care.Understanding care options is important because self-management decisions vary by care option. We report resultsof a pilot study testing a self-management intervention forbreast cancer survivors designed to improve knowledge ofcare options and to facilitate self-management by improvingdesiretoself-manage,communicationskills,andself-efficacy,and reducing anxiety, depression, and uncertainty. Self-management is critical for metastatic breast cancer survivorswho may spend years undergoing arduous treatments,weighing choices, and negotiating transitions. Our interven-tion offers support for these challenges. The intervention,“Managing Cancer Care: A Personal Guide”, consists ofseven printed modules of four pages each: “Managing YourSymptoms,”“ManagingYourCareandSettingGoals,”“CareOptions,”“Talking With Health Care Providers,”“Talkingwith Family and Friends,”“Managing Transitions,” and“Acting Confidently During Uncertainty.” Content was basedon our earlier studies of patients’ self-management [3, 10],with input from oncology staff and patients. Modules includepersonalized worksheets, “conversation starters”, and links toadditional resources. This intervention provides patients withinformation, tools, and empowerment to self-manage withfamily members and clinicians, and we believe that this isthe first study to focus on integrating knowledge of careoptions into self-management.This one-group, pre-post test study was conducted over2 months, and was approved by the Yale University HumanInvestigationCommittee.Eligibleparticipantswererecruitedata breast clinic January–May 2010 and included English-speaking women aged 21+, with metastatic breast cancer, anda prognosis of ≥3 months. Potential participants wereapproachedbytheirchemotherapynurse.Ifinterested,researchstaff explained the study and obtained consent. Following pre-test data collection, participants were oriented to all modules.After 1 month, participants were phoned to assess use of theguide,answerquestions,andschedulepost-testdatacollection,including an interview, 1 month later. Participants were askedto rate each module and the set on usefulness and appearance(1 = least; 10 = most) and to provide feedback.Data collection included demographic and clinical data,and six outcome measures. The Knowledge of Care Optionstest (KOCO), content validated in this study, uses a true–false format to assess knowledge of care options [8]. Anadapted Control Preferences Scale (CPS) was used to mea-sure preferred and actual roles in self-management [11]. TheMedical Communication Competence Scale [12] was usedto measure medical communication. Anxiety and depressionwere assessed with the Hospital Anxiety and DepressionScale [13]. Uncertainty was measured using the Uncertaintyin Illness Scale [14]. The Chronic Disease Self-EfficacyScale (CDSE) [15] was used to measure self-efficacy.Descriptive statistics were calculated for demographic andclinical data. Signed Rank Tests investigated change in out-come measures. Cohen’s effect sizes were calculated withmean differences and standard deviations. The WilcoxonRank Sum test was used to examine differences in changedscores on outcome measures between dichotomized demo-graphic groups. Descriptive statistics were calculated for par-ticipants’ ratings of the guide. Content analysis was used toexamine responses to interview questions.