| Abstract |
Background: Patients with advanced cancer (ACPs) experience physical, psychological, social, financial, informational and other health-related needs, as well as multidimensional problems, due to symptoms attributed to the disease, toxicities of treatments and coexisting comorbidities. Increased life expectancy, the need for quality and personalized care, increased costs, and lack of palliative care facilities, cause tremendous pressure on the healthcare system. Hence, there is an urgent need to activate multidisciplinary health teams to assess hospitalized patients’ unmet needs and redesign their care.
Aim: The primary goal of the thesis was the evaluation of ACPs’ individual unmet needs through self-reports and the assessment of the effectiveness of a pilot nurse-led, educational, supportive intervention based on the hierarchy of their needs in a large tertiary hospital of Crete, Greece. Secondary goals included the evaluation of ACPs’ quality of life (QoL), the validation of the questionnaire “Needs Evaluation Questionnaire (NEQ)” into Greek and the review of existing effective randomized controlled trials of ACPs’ supportive programs.
Material and Methods: The study sample consisted of 95 ACPs with colon, lung and breast cancer. 39 (41.1%) were inpatients at the oncology ward and 56 (58.9%) outpatients at the day care clinic of the Department of Medical Oncology of the University hospital of Heraklion, Crete, Greece, for the period 2007-2009. Patients were randomly selected according to the number of the three common types of cancer of the two services (multistage proportional stratified probability sampling). The inclusion criteria were: age over 18 years, ability to speak and write in Greek, and complete the questionnaire, treatment with at least one chemotherapy cycle or at least two months’ time period from the disease's diagnosis, not severely ill and granting of informed consent. The survey was conducted in two phases. In the first phase a) NEQ was used to assess patients’ supportive needs and was validated, b) European Organization for Research and Treatment of Cancer Quality of Life
Questionnaire - Core Questionnaire (EORTC QLQ-C30 ver. 3.0 and its supplements, QLQ-LC13 for lung cancer and QLQ-BR23 for breast cancer) were used to assess the QoL. In QLQ questionnaires a higher score reflects a higher functional status and in symptoms scales a worse level. Patient satisfaction with care was assessed with a 10-point scale, where greater values reflect better satisfaction. In the second phase a pilot, nurse-led, educational supportive program which aimed to meet ACPs’ prevailing informational needs was implemented and evaluated. Sixty-four patients who met the inclusion criteria were randomized to two groups: intervention and the usual care group. The intervention used educational material designed to meet the informational needs of ACPs and two 45-minute meetings with an experienced oncology nurse to solve further queries. An electronic literature search for effective interventions to meet the ACPs’ supportive needs through randomized controlled trials, was also conducted in PubMed for the period January 2010 to July 2016. Data were analyzed with the use of SPSS 23.0 software using multivariate regression methods.
Results: Literature search findings confirmed significant ACPs’ unmet supportive needs, affecting negatively their daily functions, satisfaction and QoL, with a variety of intensity and duration during the disease’s course. Additionally, the research highlighted the advantages of the systematic recording of the ACPs’ needs with simple, clinical relevant and user-friendly questionnaires, as well as the difficulties of the use of these tools in everyday practice. NEQ displayed adequate psychometric properties in the validity and reliability tests in this sample. The average number of needs reported was 8.4(±4.1). Female and younger patients reported a higher score of unmet needs than their male (40.3 versus 30.0, p=0.005) and elder (40.1 versus 29.2, p=0.001) counterparts. Patients reported higher level of needs related to receiving information about their future (73.7%), treatments (56.8%), examinations (51.6%) and the need "to speak with people who had the same experience" (53.7%). In contrast, lower scores were observed in the assistance and treatments needs including "intimacy" (11.6%), "better attention from nurses" (15.8%), "more help with eating, dressing, and going to the bathroom" (18.9%). Lung ACPs reported more frequently assistance and treatment needs than colon and breast ACPs (p<0.05). Patients reported moderate global health status/QoL (62.6) and higher cognitive,
physical, and emotional scores (75.4, 66.8, and 66.6 respectively). In symptoms scales/items, all patients had mean scores <50 while higher mean scores were observed for fatigue (41.8) and dyspnea (36.2). No significant differences in functioning and symptoms scales were found between different cancer types (p>0.05). Sexual functioning in QLQ-BR23 and alopecia in QLQ-LC13 severely affected QoL. Hospitalized patients reported worse mean global QoL than those visiting the day care clinic (55.6 versus 67.6, p=0.017), as well as in all parameters described by QLQ-C30. Most patients were satisfied with the given care (≥8/10, 74.2% of patients). An electronic literature search identified 37 studies for effective interventions to meet the ACPs’ supportive needs through randomized controlled trials, focusing mainly on physical, psychological and informational patients’ needs satisfaction.
Most interventions consisted of a multidisciplinary health team support, provision of information, patients’ education and counseling, as well as self-management strategies, training and follow up care. The search revealed that there were several problems inhibiting generalization of the studies’ conclusions: small numbers of patients, differences in methodology used, duration of interventions, number of sessions and high dropout rates. Despite these limitations, several supportive interventions were found to have an overall positive impact on patients’ needs. The pilot, nurse-led, randomized controlled trial supportive did not show significant differences among the intervention group (I) and the group receiving the usual care (C) (I =88.9%, C=77.3%, p=0,44 for group "Information: Diagnosιs /Prognosis and I=85.2%, I=77,3%, p=0,713 - for the group "Information: Examination/Treatment". Rates refer to positive answers on the presence of at least one need per group). However, a significant increase in the number of needs between baseline and the second phase of the study in each group of patients was found (p<0.001).
Conclusion: ACPs reported many unmet needs, mainly informational, that were related to gender, age, and type of cancer. NEQ is a useful tool in everyday clinical practice for obtaining information for supportive care needs. Health care personnel has to address these needs for implementing effective patient-centered care. In the present study ACPs were found to have an overall good QoL, functioning, and symptoms scores and were satisfied with the given care. However, fatigue, dyspnea, alopecia, and sexual dysfunction were found to be among the most frequently
reported distressing symptoms. Few effective studies were found using a RCT methodology for ACPs. Using the same procedure in this research a pilot nurse-led program implementation did not reduce ACPs’ informational needs. Early recognition and effective management of ACPs’ various symptoms and unmet health care needs with the use of available, operational services, infrastructure and interventions contribute to improve QoL, better planning and priorities setting, as well as optimal supportive care, while reducing suffering and health costs.
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