Variation in guideline adherence in non-Hodgkin's lymphoma care: impact of patient and hospital characteristics.

BACKGROUND: The objective of this observational study was to assess the influence of patient, tumor, professional and hospital related characteristics on hospital variation concerning guideline adherence in non-Hodgkin's lymphoma (NHL) care. METHODS: Validated, guideline-based quality indicators (QIs) were used as a tool to assess guideline adherence for NHL care. Multilevel logistic regression analyses were used to calculate variation between hospitals and to identify characteristics explaining this variation. Data for the QIs regarding diagnostics, therapy, follow-up and organization of care, together with patient, tumor and professional related characteristics were retrospectively collected from medical records; hospital characteristics were derived from questionnaires and publically available data. RESULTS: Data of 423 patients diagnosed with NHL between October 2010 and December 2011 were analyzed. Guideline adherence, as measured with the QIs, varied considerably between the 19 hospitals: >20 % variation was identified in all 20 QIs and high variation between the hospitals (>50 %) was seen in 12 QIs, most frequently in the treatment and follow-up domain. Hospital variation in NHL care was associated more than once with the characteristics age, extranodal involvement, multidisciplinary consultation, tumor type, tumor aggressiveness, LDH level, therapy used, hospital region and availability of a PET-scanner. CONCLUSION: Fifteen characteristics identified at the patient level and at the hospital level could partly explain hospital variation in guideline adherence for NHL care. Particularly age was an important determinant: elderly were less likely to receive care as measured in the QIs. The identification of determinants can be used to improve the quality of NHL care, for example, for standardizing multidisciplinary consultations in daily practice.

Development and Evaluation of an Educational E-Tool to Help Patients With Non-Hodgkin's Lymphoma Manage Their Personal Care Pathway.

BACKGROUND: An overload of health-related information is available for patients on numerous websites, guidelines, and information leaflets. However, the increasing need for personalized health-related information is currently unmet. OBJECTIVE: This study evaluates an educational e-tool for patients with non-Hodgkin's lymphoma (NHL) designed to meet patient needs with respect to personalized and complete health-related information provision. The e-tool aims to help NHL patients manage and understand their personal care pathway, by providing them with insight into their own care pathway, the possibility to keep a diary, and structured health-related information. METHODS: Together with a multidisciplinary NHL expert panel, we developed an e-tool consisting of two sections: (1) a personal section for patients' own care pathway and their experiences, and (2) an informative section including information on NHL. We developed an ideal NHL care pathway based on the available (inter)national guidelines. The ideal care pathway, including date of first consultation, diagnosis, and therapy start, was used to set up the personal care pathway. The informative section was developed in collaboration with the patient association, Hematon. Regarding participants, 14 patients and 6 laymen were asked to evaluate the e-tool. The 24-item questionnaire used discussed issues concerning layout (6 questions), user convenience (3 questions), menu clarity (3 questions), information clarity (5 questions), and general impression (7 questions). In addition, the panel members were asked to give their feedback by email. RESULTS: A comprehensive overview of diagnostics, treatments, and aftercare can be established by patients completing the questions from the personal section. The informative section consisted of NHL information regarding NHL in general, diagnostics, therapy, aftercare, and waiting times. Regarding participants, 6 patients and 6 laymen completed the questionnaire. Overall, the feedback was positive, with at least 75% satisfaction on each feedback item. Important strengths mentioned were the use of a low health-literacy level, the opportunity to document the personal care pathway and experiences, and the clear overview of the information provided. The added value of the e-tool in general was pointed out as very useful for preparing the consultation with one's doctor and for providing all information on one website, including the opportunity for a personalized care pathway and diary. The majority of the revisions concerned wording and clarity. In addition, more explicit information on immunotherapy, experimental therapy, and psychosocial support was added. CONCLUSIONS: We have developed a personal care management e-tool for NHL patients. This tool contains a unique way to help patients manage their personal care pathway and give them insight into their NHL by providing health-related information and a personal diary. This evaluation showed that our e-tool meets patients' needs concerning personalized health-related information, which might serve as a good example for other oncologic diseases. Future research should focus on the possible impact of the e-tool on doctor-patient communication during consultations.

Improvement of hospital care for patients with non-Hodgkin's lymphoma: protocol for a cluster randomized controlled trial (PEARL study).

BACKGROUND: Malignant lymphomas constitute a diverse group of cancers of lymphocytes. One well-known disease is Hodgkin's lymphoma; the others are classified as non-Hodgkin's lymphoma (NHL). NHLs are the most common hematologic neoplasms in adults worldwide, and in 2012 over 170,000 new cases were estimated in the United States and Europe.In previous studies, several practice gaps in hospital care for patients with NHL have been identified. To decrease this variation in care, the present study aims to perform a problem analysis in which barriers to and facilitators for optimal NHL care will be identified and, based on these findings, to develop (tailored) improvement strategies. Subsequently, we will assess the effectiveness, feasibility and costs of the improvement strategies. METHODS/DESIGN: Barriers and facilitators will be explored using the literature, using interviews and questionnaires among physicians involved in NHL care, and patients diagnosed with NHL. The results will be used to develop a tailored improvement strategy. A cluster randomized controlled trial involving 19 Dutch hospitals will be conducted. Hospitals will be randomized to receive either an improvement strategy tailored to the barriers and facilitators found or, a standard strategy of audit and feedback.The effects of both strategies will be evaluated using previously developed quality indicators. Adherence to the indicators will be measured before and after the intervention period based on medical records from newly diagnosed NHL patients. To study the feasibility of both strategies, a process evaluation will be additionally performed. Data about exposure to the different elements of the strategies will be collected using questionnaires. Economic evaluation from a healthcare perspective will compare the two implementation strategies, where the costs of the implementation strategy and changes in healthcare consumption will be assessed. DISCUSSION: The presence of variation in the use of diagnostic tests, treatment, and follow-up between different physicians in different hospitals in the Netherlands is important for patients. To reduce the existing variation in care, implementation of tailored interventions to improve NHL care is necessary. TRIAL REGISTRATION: This trial is registered at ClinicalTrial.gov as the PEARL study, registration number NCT01562509.

Development of generic quality indicators for patient-centered cancer care by using a RAND modified Delphi method.

BACKGROUND: Despite growing attention to patient-centered care, the needs of cancer patients are not always met. OBJECTIVE: Using a RAND modified Delphi method, this study aimed to systematically develop evidence-based indicators, to be used to measure the quality of patient-centered cancer care as a first step toward improvement. METHODS: First, key recommendations were identified from literature and were distributed over 5 domains of patient-centered cancer care: communication, physical support, psychosocial care, after-care, and organization of care. Generic key recommendations, with best available evidence, were selected from guidelines. A multidisciplinary panel of patients and medical professionals (n = 14) rated and prioritized these recommendations in a written procedure. Subsequently, the panel discussed the recommendations at a consensus meeting. RESULTS: Key recommendations were identified for communication (n = 32), physical support (n = 13), psychosocial care (n = 25), after-care (n = 11), and organization of care (n = 11). For all domains, recommendations based on high-level evidence were identified except for after-care and physical support. The panel developed 17 indicators concerning criteria for communication and informed consent, evaluation of communication skills, provision of information, examination of emotional health, appointment of a care coordinator, physical complaints, follow-up, rehabilitation, psychosocial effects of waiting times, and self-management. CONCLUSIONS: A set of 17 indicators for patient-centered cancer care resulted from this study. Evidence support was available for most indicators. IMPLICATIONS FOR PRACTICE: This set provides an opportunity to measure and improve the quality of patient-centered cancer care. It is generic and therefore applies to many patients.

Development and measurement of guideline-based indicators for patients with non-Hodgkin's lymphoma.

PURPOSE: Patients with cancer are not always treated according to available guidelines. Factors such as age and comorbidities are frequently used as arguments for nonadherence. The aim of this study was to measure guideline adherence with guideline-based indicators for patients with non-Hodgkin's lymphoma (NHL) and to examine the need for improvement, considering relevant arguments. METHODS: A RAND-modified Delphi procedure was used to systematically develop NHL indicators. We evaluated their improvement potential (defined as < 90% score) in a random sample of patients with NHL (N = 431) diagnosed in 2006-2007 in 22 hospitals in the Netherlands with data from medical records. Multilevel logistic regression analyses were used to estimate the relationship between indicator scores and factors: comorbidity index (combined with age), stage, patient's objections, and lymphoma type. Scores were adjusted for significant factors. RESULTS: Of the 20 indicators developed, 16 had improvement potential. Scores were lowest for assessment of International Prognostic Index, 21%; imaging of neck, thorax, and abdomen and bone marrow examination during the diagnostic process, 23%, and after chemotherapy, 37%; adequate pathology reporting, 11%; and multidisciplinary discussion of patients, 21%. Scores for eight indicators were better for patients with a low Charlson index, stage III or IV disease, no objections to care, and aggressive lymphoma. After adjustments, adherence to all but one indicator (administration of the combination of rituximab and cyclophosphamide-doxorubicin-vincristine-prednisone) remained < 90%. CONCLUSION: In the Netherlands, almost all indicators for NHL needed improvement. This should be evaluated in other countries as well. International efforts should be undertaken to improve the quality of care of this often curable malignancy.

Preserved sensitivity to beta2-adrenergic receptor agonists in patients with type 1 diabetes mellitus and hypoglycemia unawareness.

BACKGROUND AND OBJECTIVE: Use of beta(2)-adrenergic receptor agonists has been advocated for the treatment of hypoglycemia unawareness in type 1 diabetes. In vitro, however, hypoglycemia unawareness has been associated with reduced beta(2)-adrenergic sensitivity. Therefore, in vivo sensitivity to beta(2)-adrenergic receptor agonist stimulation was compared between type 1 diabetic patients with and without hypoglycemia unawareness and nondiabetic controls. METHODS: Ten type 1 diabetic patients with hypoglycemia unawareness, 12 type 1 diabetic patients with intact hypoglycemic awareness, and 11 healthy controls were enrolled. beta(2)-Adrenergic sensitivity was determined by measuring the forearm vasodilator response to intraarterial infusion of salbutamol. Salbutamol was infused in six increasing doses ranging from 0.003 to 1.0 mug(1).min(-1).dl(-1). Forearm blood flow (FBF) was bilaterally measured by venous occlusion plethysmography. Diabetic patients received low-dose insulin before FBF measurements to ensure that experiments were carried out under normoglycemic conditions. RESULTS: At baseline, FBF was 1.9 +/- 0.3 ml(1).min(-1).dl(-1) in controls, 2.3 +/- 0.4 ml(1).min(-1).dl(-1) in patients with intact awareness, and 1.4 +/- 0.1 ml(1).min(-1).dl(-1) in patients with hypoglycemia unawareness (P = 0.048 vs. aware patients). In response to salbutamol, FBF increased 9.1-fold in controls, 8.0-fold in patients with intact awareness, and 10.7-fold in patients with hypoglycemia unawareness (P = NS). Heart rate increased in all groups due to systemic spillover of salbutamol but appeared blunted, considering a greater fall in mean arterial pressure in patients with hypoglycemia unawareness. CONCLUSIONS: Sensitivity to beta(2)-adrenergic receptor agonist stimulation is preserved in type 1 diabetic patients with hypoglycemia unawareness.