Evaluation of centers for information and support combining formal and informal care for patients with cancer: a systematic review of the literature.

PURPOSE: Clear information and supportive care are necessary for patients with cancer to effectively manage their condition. Traditionally, healthcare professionals offer information and support via the so-called formal care route. In addition, research has found favorable effects of informal care provided by volunteer programs and informal "walk-in support centers." Less research has been done on initiatives that combine formal and complementary informal supportive care for patients with cancer. This systematic literature study aimed to discover (1) which types of initiatives are described in the literature, (2) what type of care they offer, and (3). how they are evaluated in terms of outcome measures. METHODS: We performed a systematic literature search of MEDLINE, Embase, PsycINFO, and CINAHL. Studies were included if the collaboration between one type of formal care together with one type of informal care was explicitly mentioned in the article. The search was not restricted to a specific cancer type. RESULTS: A total of 4869 records were retrieved and 18 studies were included. In most studies, the care provided consisted of emotional support for, and/or providing information to, patients and their families. Initiatives were evaluated with interviews and questionnaires. Patients with cancer reported that they were satisfied with the care offered, including information, social and emotional support, help with activities of daily living, and family-related issues. Volunteers reported that visits they made were experienced positive and rewarding and the volunteers were confident about their contribution to general healthcare. Some negative experiences were reported by volunteers, e.g., interference of their own cancer diagnosis with volunteer work. The importance of proper training was stressed. CONCLUSIONS: Initiatives combining formal and informal supportive care hold the potential of added value in terms of providing emotional support for, and providing information to, patients with cancer. Support and specific training for volunteers can be viewed as success factors in the involvement of volunteers in formal care practices.

Psychosocial screening instruments to assist support consultants in patients with cancer.

OBJECTIVES: Around 30% of patients with cancer suffer from psychosocial problems requiring formal care; however, these problems are often not identified. Support consultants may play a role in identifying these problems. This study investigates the feasibility of using validated screening instruments to assist support consultants in identifying psychosocial problems. METHODS: Prospective observational study focusing on patients visiting support consultants at hospital-affiliated centres for information and support. The feasibility of using screening instruments was assessed based on the percentage of patients willing to participate. For these patients, possible psychosocial problems were objectified, and referral to formal care was assessed. RESULTS: Out of 227 eligible patients at IntermeZZo, 48 participated (21.1%). At PATIO, over 141 consultations took place and 27 patients participated. Main reason for non-participation was that patients did not feel such a need. The majority showed elevated scores, indicating possible psychosocial problems and around half were referred. Respecting the individual needs of patients and offering them with what benefits them is crucial, including screening instruments does not match their needs nor did support consultants feel it was appropriate in certain cases. CONCLUSION: Given the low percentage of questionnaires administered, it does not seem feasible to systematically administer them to patients visiting support consultants.

Cancer centre information and support services and patient needs: participatory action research study.

OBJECTIVES: Clear information and supportive care are necessary for oncology patients and their relatives to manage the disease (trajectory). Centres for information and support aim to address their needs by offering informal and non-medical formal services. This study evaluated whether the centres' services offered meet the needs of its visitors, and whether there is interest for these among oncology patients treated at affiliated hospitals. METHODS: In this participatory action research, interviews were conducted among visitors of two centres (Patient Information Center Oncology (PATIO) and IntermeZZo) and among patients treated at the affiliated hospitals. Visitors were interviewed to share their experiences regarding the centres' services offered. Patients from the hospitals were interviewed about their interest in such support. Data were collected during three different periods and adjustments were made to the centres' services between measurements. RESULTS: 111 (PATIO) and 123 visitors (IntermeZZo) were interviewed, and 189 and 149 patients at the respective hospitals. Reasons to visit PATIO/IntermeZZo were to relax (93.1%), seek professional advice (54.6%) and meet peers (36.3%). Visitors indicated that the visits met their needs (99.1%), citing the accessible support and the expertise in oncology. 20% of patients interviewed at the hospitals expressed interest in visiting PATIO/IntermeZZo. The majority of patients (89.6%) considered these centres an integral part of their treatment process. These findings were stable over time. CONCLUSIONS: Patients and their relatives highly value the services of hospital-affiliated centres for information and support. Future research should address how such centres best be integrated in the Dutch healthcare system.

Unmet care needs of patients with advanced cancer and their relatives: multicentre observational study.

OBJECTIVES: The care needs of patients with advanced cancer and their relatives change throughout the disease trajectory. This study focused on the care-related problems and needs of patients with advanced cancer and their relatives. This was done from the perspective of centres for information and support. METHODS: This cross-sectional study used data from the eQuiPe study: an observational cohort study in which 40 Dutch hospitals participated. All adult patients with a diagnosis of a metastasised tumour and their relatives were eligible. Measures included information on the patients' and relatives' care problems and needs, assessed by the short version of the Problems and Needs in Palliative Care questionnaire. Socioeconomic demographics were also collected. RESULTS: 1103 patients with advanced cancer and 831 relatives were included. Both patients (M=60.3, SD=29.0) and relatives (M=59.2, SD=26.6) experienced most problems in the domain of 'psychological issues'. Both patients (M=14.0, SD=24.2) and relatives (M=17.7, SD=25.7) most frequently reported unmet needs within this domain. The most often reported unmet need by patients was 'worrying about the future of my loved ones' (22.0%); for relatives this was 'fear for physical suffering of the patient' (32.8%). There was no clear relationship between socioeconomic demographics and the experienced unmet needs. CONCLUSIONS: The most often mentioned unmet needs consisted of fears and worries, followed by a broad range of topics within multiple domains. Centres for information and support may play a role in reducing the unmet needs of (potential) visitors as these centres provide support on a broad range of topics.

A prospective study evaluating the response of patients with unrelieved cancer pain to parenteral opioids.

BACKGROUND: The initiation of continuous parenteral (subcutaneous or intravenous) opioids or a change of opioid (opioid rotation) are treatment options for patients who fail on oral or transdermal opioids. There are insufficient data on the efficacy of these strategies, and comparative data are unavailable. METHODS: The authors prospectively evaluated the efficacy of the start of parenteral opioids in 100 patients with cancer pain who failed on conventional opioids. Pain intensity was rated at rest and during movement from 0 to 10 and was categorized as mild (0-4), moderate (5-6), or severe (7-10): Clinically important pain control was defined as a decrease >or= 2 points in pain intensity and pain intensity < 7. Pain control was evaluated on the second day and again when a clinical decision was made to continue or change parenteral opioid treatment after a median of 6 days. The presence of side effects (absent, mild, moderate, or severe) was evaluated. RESULTS: The mean pain intensity at rest decreased significantly from 6.3 to 4.4 at 48 hours and to 3.4 at the end of treatment. The mean pain intensity during movement decreased significantly from 8.4 to 5.7 at 48 hours and to 4.6 at the end of treatment. Clinically important pain control at rest was seen in 52% of patients at 48 hours, in 71% of patients at the end of treatment; and clinically important pain control during movement was seen in 43% of patients at 48 hours and in 61% of patients at the end of treatment. The proportion of patients with mild pain increased significantly both at rest and during movement. Side effects were present in 78% of patients, and they resolved completely in 32% of patients. The median intravenous morphine equivalent dose increased from 80 mg per day to 135 mg per day at 48 hours and to 201 mg per day at the end of treatment. Results were not different for opioid rotation or for change of route only, nor did the start of antitumour treatment influence the results. In 34% of patients, it was decided to rotate to a second-line parenteral opioid or to start either spinal analgesia or a sedation procedure after a median of 6 days. During follow-up, 18% of patients who were dismissed with parenteral opioids (and 6% of all patients) needed a further change of treatment. CONCLUSIONS: Parenteral opioids improved the balance between analgesia and side effects in patients with cancer pain who failed on conventional opioids, with an important improvement seen in 71% of patients. On the basis of this study, it is concluded that parenteral opioids are a good alternative to spinal opioids. Furthermore, it is suggested that a change of route alone is as effective as opioid rotation.