What are essential elements of high-quality palliative care at home? An interview study among patients and relatives faced with advanced cancer.

BACKGROUND: In the Netherlands, general practitioners (GPs) and community nurses play a central role in the palliative care for home-dwelling patients with advanced cancer and their relatives. To optimize the palliative care provision at home, it is important to have insight in the elements that patients and relatives consider essential for high-quality palliative care, and whether these essentials are present in the actual care they receive. METHODS: Qualitative semi-structured interviews were conducted with 13 patients with advanced cancer and 14 relatives. The participants discussed their experiences with the care and support they received from the GP and community nurses, and their views on met and unmet needs. Interview data were analysed according to the principles of thematic analysis. RESULTS: Patients as well as relatives considered it important that their GP and community nursing staff are medically proficient, available, person-focused and proactive. Also, proper information transfer between care professionals and clear procedures when asking for certain resources or services were considered essential for good palliative care at home. Most interviewees indicated that these essential elements were generally present in the care they received. However, the requirements of 'proper information transfer between professionals' and 'clear and rapid procedures' were mentioned as more difficult to meet in actual practice. Patients and relatives also emphasized that an alert and assertive attitude on their own part was vital in ensuring they received the care they need. They expressed worries about other people who are less vigilant regarding the care they receive, or who have no family to support them in this. CONCLUSIONS: Medical proficiency, availability, a focus on the person, proper information transfer between professionals, clear procedures and proactivity on the part of GPs and community nursing staff are considered essential for good palliative care at home. Improvements are particularly warranted with regard to collaboration and information transfer between professionals, and current bureaucratic procedures. It is important for care professionals to ensure that the identified essential elements for high-quality palliative care at home are met, particularly for patients and relatives who are not so alert and assertive.

Effect of the partner's health and support on cancer patients' use of general practitioner care.

OBJECTIVE: Cancer and its treatment often have a profound impact on patients, leading to increased health care use in the years after diagnosis. Social support is an important determinant of health care use. Partners of cancer patients may not always be able to provide all support patients need and patients may then revert to professional health care. We examined whether partners' health and the support they provide affect the use of general practitioner (GP) care in cancer patients. METHODS: Cancer patients aged ≥18, diagnosed <20 years ago with a cancer type with a 5-year survival rate >20% and no distant metastases were sent a questionnaire, along with their partners. Patients' self-reported recent use of GP care, i.e. whether they had discussed health problems with the GP in the past year, was assessed. Partner support as perceived by the patient was measured on three scales: Active engagement, protective buffering and overprotection. RESULTS: We included 219 patients and partners. Many patients discussed physical and emotional problems with their GP (60% and 28% of patients, respectively). Patients were less likely to discuss physical problems when they experienced active engagement and protective buffering, the latter only for females. CONCLUSION: Partner support affects use of GP care in cancer patients. GPs should therefore pay attention to the support style of the partner. GPs could ask about the support provided by the partner and inform both patients and partners about support groups where they can share experiences.

The combined effect of cancer and chronic diseases on general practitioner consultation rates.

AIM: More than two-thirds of cancer patients have one or more chronic diseases besides cancer. The purpose of this study was to get detailed insight into the combined effect of cancer and chronic diseases on general practitioner (GP) consultation rates. METHODS: From the NIVEL Primary Care Database we identified cancer patients with diabetes mellitus (n=629), osteoarthritis (n=425), coronary artery disease (n=466), COPD (n=383) or without a chronic disease (n=1507), diagnosed with cancer between 2002 and 2010. They were matched on sex, age, practice and chronic disease to 6645 non-cancer controls. RESULTS: 2-5 years after diagnosis, cancer patients without a chronic disease had on average 6.5 GP contacts per year, those with a comorbid disease almost twice as many (ranging from 10 for osteoarthritis to 12.4 for COPD). A similar difference was seen in non-cancer controls. The number of GP contacts for chronic diseases did not differ between cancer patients and controls. The increase in the number of GP consultations with age and number of chronic diseases was similar in cancer patients and controls. Consultation rates were similar in cancer patients and controls if they were stratified by number of chronic diseases while counting cancer as a chronic disease. CONCLUSIONS: Two to five years after diagnosis, cancer leads to an increase in GP contacts that is similar to having a chronic disease. This increase does not differ between those with and without a chronic disease and cancer does not seem to increase the impact of having a chronic disease.

For which health problems do cancer survivors visit their General Practitioner?

Primary health care use of cancer patients is increased, even years after active treatment. Insight into the reasons for this could help in developing and improving guidelines and planning of health care, which is important given the expected increase in cancer survivors. Using data from the Netherlands Information Network of Primary Care, we selected 1256 adult breast cancer, 503 prostate cancer and 487 colorectal cancer patients diagnosed between 2001 and 2006. We compared diseases and complaints for which they contacted their General Practitioner (GP) 2-5 years after diagnosis to age and sex matched non-cancer controls from the same practice. Cancer patients consulted their GP more often than controls for acute symptoms such as abdominal pain and fatigue (18% more in breast cancer, 26% more in prostate cancer) and infections, such as cystitis or respiratory infections (45% in breast cancer and 17% in colorectal cancer). Consultations for chronic diseases and psychosocial problems were slightly increased: breast cancer patients had more contacts related to diabetes (55%), sleep disturbance (60%) and depression (64%), prostate cancer patients had more contacts related to hypertension (53) and chronic obstructive pulmonary disease (COPD, 34%). Adverse drug effects were almost twice as often observed in prostate and colorectal cancer patients than in controls. Fear of cancer recurrence was noted as the reason for consulting the GP in only 20 patients. Concluding, increased primary health care use in cancer survivors is mostly related to common infections and acute symptoms, which may be due to direct effects of cancer treatment or increased health concerns.

Participation in daytime activities among people with mild or moderate intellectual disability.

BACKGROUND: Community participation has been defined as performing daytime activities by people while interacting with others. Previous studies on community participation among people with intellectual disability (ID) have mainly focused on the domestic life aspect. This study investigates the variation in community participation in the domains work, social contacts and leisure activities among people with ID in the Netherlands. A number of categories of people with ID were distinguished by: (1) gender; (2) age; (3) type of education; (4) severity of ID; and (5) accommodation type. METHODS: Data were gathered on 653 people with mild or moderate ID, of whom 513 by oral interviews and 140 by structured questionnaires filled in by representatives of those who could not be interviewed. Pearson chi-square tests were used to test differences between categories of people with ID in the distributions of the participation variables. Additional logistic regression analyses were conducted to correct for differences between the categories in other variables. RESULTS: Most people with mild or moderate ID in the Netherlands have work or other daytime activities, have social contacts and have leisure activities. However, people aged 50 years and over and people with moderate ID participate less in these domains than those under 50 years and people with mild ID. Moreover, people with ID hardly participate in activities with people without ID. CONCLUSION: High participation among people with a mild or moderate ID within the domains of work, social contact and leisure activities does not necessarily indicate a high level of interaction with the community, because the majority hardly interact with people without ID. Furthermore, older people with ID and people with a more severe level of ID seem to be more at risk for social exclusion.

Does trust in health care influence the use of complementary and alternative medicine by chronically ill people?

BACKGROUND: People's trust in health care and health care professionals is essential for the effectiveness of health care, especially for chronically ill people, since chronic diseases are by definition (partly) incurable. Therefore, it may be understandable that chronically ill people turn to complementary and alternative medicine (CAM), often in addition to regular care. Chronically ill people use CAM two to five times more often than non-chronically ill people. The trust of chronically ill people in health care and health care professionals and the relationship of this with CAM use have not been reported until now. In this study, we examine the influence of chronically ill people's trust in health care and health care professionals on CAM use. METHODS: The present sample comprises respondents of the 'Panel of Patients with Chronic Diseases' (PPCD). Patients (>or=25 years) were selected by GPs. A total of 1,625 chronically ill people were included. Trust and CAM use was measured by a written questionnaire. Statistical analyses were t tests for independent samples, Chi-square and one-way analysis of variance, and logistic regression analysis. RESULTS: Chronically ill people have a relatively low level of trust in future health care. They trust certified alternative practitioners less than regular health care professionals, and non-certified alternative practitioners less still. The less trust patients have in future health care, the more they will be inclined to use CAM, when controlling for socio-demographic and disease characteristics. CONCLUSION: Trust in future health care is a significant predictor of CAM use. Chronically ill people's use of CAM may increase in the near future. Health policy makers should, therefore, be alert to the quality of practising alternative practitioners, for example by insisting on professional certification. Equally, good quality may increase people's trust in public health care.

Work adjustments among the chronically ill.

Work(place) adjustments can help restore the work capacity of persons with a chronic disease. This study aims to quantify the presence of work adjustments among chronically ill workers in the Netherlands, and to investigate the extent to which the presence of work adjustments are related to the experience of work-interfering problems, disease characteristics or work characteristics. Data for this study are derived from the Dutch Panel of Patients with Chronic Diseases. The results discussed here relate to data collected in 1999 from a representative sample of 556 working people with various chronic somatic diseases. Of the work-interfering problems, the ones related to physical disabilities, concentration or memory deficits and transportation emerged as the most important factors related to the presence of either immaterial (i.e. not material) or material work adjustments. In addition, higher age and lower educational level were associated with a higher probability of immaterial adjustments; pain, attack frequency and physical demands of the job were important predictors of material work adjustments.

Podiatric care for diabetic patients with foot problems: an observational study.

The aims of this study were to describe podiatric care for diabetic patients with foot problems and to explore the changes in knowledge, self-care behaviour and physical functioning after podiatric care. The treatment characteristics of 26 diabetic patients referred to podiatry were assessed. Prior to the first podiatric visit (T1) and 20 weeks later (T2) these patients filled in a structured questionnaire and performed a six-minute walking test. In half the number of patients preventive goals were set and strived for by general education about the diabetic foot and advice on footwear and self-care behaviour. With regard to treatment, reduction of pain was the most frequently selected goal. To achieve this reduction, a variety of interventions was applied. After podiatric care, patients reported having less severe foot pain and some improvements in functional ability and self-care behaviour were found. This study offers clues to start controlled clinical trials on the effectiveness of podiatry for diabetic patients. Trials should not only be directed to (the role of podiatry in) ulcer healing; it may be even more significant to study its effectiveness for the purpose of prevention and treatment of early-stage diabetic foot symptoms.

Clinical and functional correlates of foot pain in diabetic patients.

PURPOSE: Patients with diabetes mellitus frequently suffer from foot pain. This pain seems to be a neglected area in studies on the diabetic foot. The purpose of this study was to identify clinical variables associated with foot pain in diabetic patients. In addition, the relationships between foot pain and several functional impairments and disabilities were explored. METHOD: The research group consisted of 29 diabetic patients with any symptoms possibly associated with a diabetic foot, who were referred to podiatry. The relationships between several clinical measures and foot pain were analysed by means of Mann-Whitney U-tests. In addition, Spearman rank correlations coefficients were computed to assess the relationships between foot pain and measures of functional health. RESULTS: Diabetic patients suffering from sensory neuropathy experience more severe foot pain. Furthermore, patients with more severe foot pain experience more fatigue, more disabilities in walking and a lower level of affective well-being. CONCLUSION: Based on these findings this paper concludes that foot pain in diabetic patients is an important impairment which deserves further scientific attention.

Clinical experience of rehabilitation therapists with chronic diseases: a quantitative approach.

OBJECTIVES: To provide an overview of the numbers of patients with selected chronic diseases treated by rehabilitation therapists (physical therapists, occupational therapists, exercise therapists and podiatrists). The study was performed to get quantitative information on the degree to which rehabilitation therapists are experienced in the treatment of chronically ill patients. METHODS: Secondary analyses were performed on several databases containing representative data on patients treated by rehabilitation therapists. Rates per 1000 patients in the populations of these rehabilitation therapists and 90% confidence intervals were computed for patients with the following diagnoses: ischaemic heart diseases, stroke, rheumatoid arthritis, osteoarthritis, osteoporosis, multiple sclerosis, Parkinson's disease, epilepsy, headache syndromes, COPD/asthma, diabetes mellitus and chronic back pain (the size of the latter group could only be assessed in physical therapy in primary care). RESULTS: The largest group of chronically ill patients treated by physical therapists in primary care are patients with chronic back pain (82 per 1000). Stroke patients are the most common chronically ill patients treated by physical therapists in institutional care (157 per 1000) and by occupational therapists in institutional (358 per 1000) and noninstitutional care (246 per 1000). These therapists also see a variety of other chronically ill patients. Exercise therapists and podiatrists treat less patients with the selected chronic diseases.

[Indications for management in long-term, physically unexplained fatigue symptoms]. / Aanwijzingen voor het beleid bij langdurige, lichamelijk onverklaarde moeheidsklachten.

In meetings arranged by the minister of Public Health, Welfare and Sports between general practitioners and specialists concerning chronic fatigue syndrome (CFS), suggestions for the diagnosis, treatment and assistance and support of patients with protracted physically unexplained fatigue symptoms, were established in the light of current scientific insight. The term 'CFS' is applicable in cases of fatigue complaints, of at least 6 months' standing, reported by the patient himself and evaluated medically, for which no physical explanation has been found and which cause considerable disabilities in professional social and/or personal functioning. The management depends on the duration of the illness. A distinction is made between an acute phase (up to one month after the first consultation; the policy is mostly expectative), a subacute phase (until 6 months after the onset of the complaints and disabilities; the management is aimed at making the patient accept the condition and persuading him or her to make an effort to promote health) and a chronic phase (from 6 months after the onset of the complaints and disabilities; the management is aimed at health-promoting behaviour and cognitions). Further (laboratory) examinations are useful only if the symptoms have not disappeared after one month (this is the case in approximately 20% of the patients); such examinations may be useful in older patients earlier. It is important that the CFS patient learns to realize that it is useless to continue to spend energy on searching for causes and possible therapies, but that he should try to promote his own health, for instance by means of a quantified programme of activities linked to a time schedule (instead of to a level of fatigue).