Luis Gonzalez

Patient education in allogeneic hematopoietic cell transplant: What patients wish they had known about quality of life

Quality of life (QOL) is increasingly recognized as an important clinical outcome of hematopoietic cell transplantation (HCT), but patient education is often overlooked. The aim of the current qualitative study was to examine education regarding post-HCT QOL from the patient’s perspective. Allogeneic HCT recipients participated in one of four focus groups. Participants were asked to recall what they had been told about post-HCT QOL as they were preparing for transplant, how their QOL differed from what they expected and how to educate future patients about post-HCT QOL. Verbatim transcripts were coded for both a priori and emergent themes using content analysis. A total of 24 patients participated (54% female, mean age 51, range 23–73 years). Participants frequently expressed the desire for additional education regarding post-HCT QOL, particularly late complications. They noted that late complications were often unexpected, had a profound impact on their QOL and threatened their ongoing sense of recovery. They emphasized that the timing, content and format of education regarding QOL should be flexible to meet their diverse needs. Findings from the current study draw attention to the importance of patient education regarding post-HCT QOL as well as additional QOL research designed with patient education in mind.

Improving Awareness of Cancer Clinical Trials Among Hispanic Patients and Families: Audience Segmentation Decisions for a Media Intervention

Clinical trials hold great promise for cancer treatment; yet, Hispanic cancer patients have low rates of clinical trial participation. Lack of awareness and knowledge of clinical trials and language barriers may account for low participation rates. Patient education through audiovisual materials can improve knowledge of and attitudes toward clinical trials among Hispanic populations. In this study, 36 Hispanic cancer patients/survivors and caregivers in Florida and Puerto Rico participated in focus groups to aid in developing a Spanish-language DVD and booklet intervention designed to increase knowledge about clinical trials. Focus group results showed (a) low levels of knowledge about clinical trials, (b) uncertainty about why a physician would expect a patient to make a choice about treatment, and (c) desire for family participation in decision making. Respondents expressed various preferences for aspects of the DVD such as showing extended family in the DVD and physician explanations about key terms. On the basis of these preferences, the authors developed a creative brief for a DVD. The content of the DVD was reviewed by Hispanic community leaders and key stakeholders. A final DVD was created, in Spanish, using Hispanic patients and physicians, which contained the information deemed important from the focus groups and stakeholder interviews. The DVD is complete with companion booklet and currently undergoing a randomized control trial.

Caregivers' quality of life after blood and marrow transplantation: a qualitative study

A sizable literature has documented the challenges of providing care to a family member with cancer, although fewer studies have reported on caregivers of allogeneic hematopoietic cell transplantation (HCT) recipients. Existing studies of HCT caregivers suggest that they are at risk for distress. For example, prior to HCT, caregivers report significantly higher levels of anxiety, traumatic stress, and insomnia than population norms (1, 2). Several years after transplant, risk of depression among spouses of HCT recipients is 3.5 times greater than that of similar peers (3). Spouses of HCT recipients also report less social support, greater marital dissatisfaction, greater loneliness, and less spiritual well-being than their peers (3). In qualitative interviews of HCT recipients and spouses, spouses were more likely than patients to report negative life changes as the result of transplant (4). The goal of the current study was to qualitatively examine post-HCT quality of life from the caregiver’s perspective. As part of a larger qualitative study of patient education regarding quality of life after allogeneic HCT, patients and caregivers were recruited from a single institution to participate in separate focus groups. At this institution, caregivers are required to attend a class regarding how to care for an allogeneic HCT recipient. Caregiver support groups are available as well. Results of the patient focus groups have been reported previously (5). Caregivers were asked about their quality of life and their perceptions of the patient’s quality of life, with a focus on how the transplant team could better prepare future caregivers for life after transplant. As the study was exploratory in nature, there were no a priori hypotheses. Caregivers were nominated by eligible patient participants (5). To be eligible, caregivers had to be able to speak and read English and provide informed consent. Caregivers attended one of four caregiver-only focus groups held in November 2011 and March 2012. Groups ranged in size from three to six caregivers. Details of study methodology have been described previously (5). Focus group questions are listed in Table 1. A total of 16 caregivers participated in the focus groups. Participants had a median age of 55 (range 25-80). The majority was Caucasian (100%), non-Hispanic (88%), married (94%), had not completed college (62%), and reported a current annual household income of US

Feasibility trial of a Spanish-language multimedia educational intervention

40,000 a year or more (79%). Representative quotes from caregivers are displayed in Table 2. Nearly all participants agreed that providing care to a HCT recipient entailed significant physical and emotional demands. Several participants noted that caregiving required permanent life changes and a lifelong commitment to the patient. Social isolation was commonly reported and perceived to be detrimental for both the patient and caregiver. Many described constant vigilance about disinfecting their surroundings to prevent infection, sometimes far longer than required by the transplant team. Some caregivers reported a loss of identity as they no longer engaged in the activities they used to find meaningful. Although some caregivers reported significant emotional support from family and friends, others felt overlooked as loved ones’ concerns were typically centered exclusively on the patient. Caregivers reported feeling unprepared for the severity and duration of emotional and physical changes in the patient. They also expressed difficulty determining how much they should push patients to engage in activities the caregivers perceived to be beneficial (e.g., exercising, resuming previous hobbies). Nearly all caregivers reported that their relationship with the patient was significantly changed due to the transplant process. Some felt that the transplant brought them closer together while others perceived significant strain in the relationship. Caregivers commonly voiced feelings of gratitude for the patient’s survival in addition to insomnia, helplessness, guilt, fatigue, and fear about cancer recurrence. They also described high levels of anxiety at each outpatient follow-up appointment, which were temporarily assuaged by hearing the patient’s blood counts. Although caregivers described significant negative emotions, few reported receiving psychosocial services. In general, caregivers were reluctant to discuss ways in which they took care of themselves. Many reported guilt about focusing on their own needs. Prayer, use of social support, and focusing on one day at a time were the most commonly reported coping strategies. Use of web-based sharing systems such as blogging, email, or other social networking sites to inform family and friends of the patient’s progress and receive support was also widely perceived to be helpful. Caregivers reported being well-informed regarding physical symptoms patients were likely to experience during the acute transplant period, symptom management, and other requirements for daily care of an HCT recipient (e.g., flushing lines, precautions against infection). Caregivers wanted more information regarding how to cope with emotional and cognitive changes in the patient. It was suggested a mentoring program be created, in which names and phone numbers of experienced caregivers were provided to caregivers new to HCT. In general, caregivers echoed many of the same themes as patients (5), including greater need for information regarding post-transplant morbidities such as graft-versus-host disease (GVHD). Caregivers also provided unique information about the patients’ experiences, most notably observed changes in personality, difficulty handling stress, and cognitive impairment. Caregivers participating in the current study frequently expressed significant unmet needs for information and support. We are aware of only one previous study of an intervention for caregivers of allogeneic HCT recipients, which found that caregivers perceived emotional expression to be helpful in dealing with stress (6). Caregivers may also benefit from greater information regarding long-term morbidities, tools to help manage their own and the patient’s emotional distress, and awareness of the importance of self-care and outside support (7). Studies among cancer patients suggest that this type of intervention can significantly reduce caregiver burden and improve quality of life (8). Although evidence-based caregiving interventions are currently lacking in HCT, caregivers should be directed towards resources available through cancer- and transplant-specific websites (e.g., National Marrow Donor Program, National Bone Marrow Transplant Link, Leukemia and Lymphoma Society).

Knowledge and Educational Needs about Pre-Implantation Genetic Diagnosis (PGD) among Oncology Nurses

Background Hispanic cancer patients are underrepresented in clinical trials; research suggests lack of knowledge and language barriers contribute to low accrual. Multimedia materials offer advantages to Hispanic populations because they have high acceptability, are easy to disseminate, and can be viewed with family. Purpose Hispanic cancer patients and caregivers participated in focus groups to aid in developing a Spanish-language multimedia intervention to educate Hispanic cancer patients about clinical trials. We explored the feasibility of delivering the intervention in medical oncology clinics. Methods A total of 35 patients were randomized to either the multimedia intervention group (n = 18) or a control group (n = 17) who were asked to read the National Cancer Institute’s Spanish-language clinical trials brochure. Self-reported data on knowledge about and attitudes toward clinical trials, self-efficacy for participating in a clinical trial, intention to participate in a clinical trial if asked, and receptivity to information about a clinical trial were collected at baseline and 10 days later. Results Delivery of the multimedia presentation in oncology clinics was feasible. The intervention group had more knowledge about clinical trials at follow-up than the control group; scores for intention to participate in a clinical trial by participants in the intervention group increased from 3.8 to 4.0 of a possible 5, but declined in the control group from 4.5 to 4.1. No statistically significant difference was detected between groups in scores for attitudes or self-efficacy for making a decision to participate in a clinical trial. Limitations Our sample size was inadequate to identify differences between the informational methods. Although all patients were asked about their willingness to participate in a clinical trial, this decision was hypothetical. In addition, the study was conducted with a sample of Spanish-speaking Hispanic cancer patients at a comprehensive cancer center in Florida. Thus, the results may not generalize to other Hispanic populations. Conclusion In the pilot project, we demonstrated the feasibility of delivering multimedia information to patients in medical oncology clinics. Because delivery in a clinical setting was found to be feasible, a larger study should be conducted to evaluate the efficacy of the multimedia intervention with respect to promoting accrual of Hispanic patients to clinical trials.

Healthcare providers’ knowledge and attitudes about rapid tissue donation (RTD): phase one of establishing a rapid tissue donation programme in thoracic oncology

Preimplantation genetic diagnosis (PGD), a form of assisted reproductive technology, is a new technology with limited awareness among health care professionals and hereditary cancer families. Nurses play a key role in the care of patients and are often in an ideal position to discuss and refer patients on sensitive quality of life issues, such as PGD. Two hundred and one nurses at Moffitt Cancer Center (MCC) responded to an online survey assessing knowledge and educational needs regarding PGD and families with hereditary cancer. The majority of respondents were female (n = 188), white (n = 175), had an RN/BSN degree (n = 83), and provided outpatient care at the cancer center (n = 102). More than half of respondents (78%) were unfamiliar with PGD prior to the survey and respondents who had heard of PGD had limited knowledge. More than half of the participants reported PGD was an acceptable option for families with hereditary cancer syndromes and thought individuals with a strong family or personal history should be provided with information about PGD. This study indicates that oncology nurses may benefit from and desire education about PGD. With advances in reproductive technology and options, further PGD education is needed among healthcare professionals. An examination of current oncology nursing curriculum and competencies regarding genetic education may identify need for future revisions and updates.

Abstract A30: Evaluating Spanish audiovisual materials about cancer clinical trials: Improving awareness among Hispanic patients and families

In preparation for the development of a rapid tissue donation (RTD) programme, we surveyed healthcare providers (HCPs) in our institution about knowledge and attitudes related to RTD with lung cancer patients. A 31-item web based survey was developed collecting data on demographics, knowledge and attitudes about RTD. The survey contained three items measuring participants’ knowledge about RTD, five items assessing attitudes towards RTD recruitment and six items assessing HCPs’ level of agreement with factors influencing decisions to discuss RTD. Response options were presented on a 5-point Likert scale. Ninety-one HCPs participated in the study. 66% indicated they had never heard of RTD prior to the survey, 78% rated knowledge of RTD as none or limited and 95.6% reported not having ethical or religious concerns about discussing RTD with patients. The majority were either not comfortable (17.8%) or not sure if they felt comfortable discussing RTD with cancer patients (42.2%). 56.1% indicated their knowledge of RTD would play an integral role in their decision to discuss RTD with patients. 71.4% reported concerns with RTD discussion and the emotional state of the patient. Physicians and nurses play an important role in initiating conversations about recruitment and donation to research that can ultimately influence uptake. Increasing HCP knowledge about RTD is a necessary step towards building an RTD programme. Our study provides important information about characteristics associated with low levels of knowledge and practice related to RTD where additional education and training may be warranted.

If You Did Not Document It, It Did Not Happen: Rates of Documentation of Discussion of Infertility Risk in Adolescent and Young Adult Oncology Patients' Medical Records

Introduction: Hispanic cancer patients are underrepresented in cancer clinical trials (CCTs). Recent research suggests lack of knowledge and low health literacy among non-English speaking Hispanics may contribute to low accrual rates. Audiovisual materials offer advantages to Hispanic populations in that they have been shown to have: high acceptability; easy dissemination; and can also be viewed with family. Hispanic cancer patients/survivors and caregivers participated in focus groups to aid in developing a Spanish language DVD and booklet intervention. This multi-media intervention was designed to meet the specific needs of cancer patients who prefer speaking Spanish by increasing knowledge and decreasing uncertainty about CCTs. This pilot project explored the feasibility, and effectiveness of the multimedia intervention developed by our team. Methods: 25 patients were randomized to either: (1) an intervention condition in which they were asked to view the DVD and read the accompanying brochure (n=13); or (2) a control condition in which they were asked to read the National Cancer Institute9s brochure entitled “Si tiene cancer…Lo que deberia saber sobre estudios clinicos” (If You Have Cancer…What You Should Know About Clinical Trials; n=12). Self-report data on knowledge, attitudes toward participation in CCT, self efficacy for participating in CCT, likelihood of participating in a CCT, and receptivity to CCT information, were collected at two time points: 1) in person, following study enrollment, but before receipt of the intervention assignment; and 2) by telephone interview between 7 and 28 days following study enrollment. Results: Twenty-five of twenty eight eligible patients (89%) participated in the study, mean age: 51.5 years; 48% female; 72% currently married). Despite the small sample size, trends in the data suggest participants provided with the multimedia DVD and brochure intervention believed themselves to be more capable of participating in a CCT, more receptive to learning about a CCT, and reported greater likelihood of participating in a CCT compared to patients provided standard NCI educational materials. Patients in both conditions were more knowledgeable about CCTs at follow-up. Preliminary pilot data should be confirmed in a larger randomized control trial. However, a multi-media intervention found to be effective in increasing Hispanic patients’ confidence in participating and intention to participate in a CCT has the potential to be widely disseminated. Dissemination of such an intervention may improve the quality of care for Hispanic cancer patients who are eligible for CCTs. Citation Information: Cancer Epidemiol Biomarkers Prev 2011;20(10 Suppl):A30.