The development and validation of the Leiden Bother and Needs Questionnaire for patients with pituitary disease: the LBNQ-Pituitary

Background Patients report persisting impairment in quality of life (QoL) after treatment for pituitary disease. At present, there is no questionnaire to assess (a) whether patients with pituitary disease are bothered by these consequences, and (b) their needs for support. Objective To develop and validate a disease-specific questionnaire for patients with pituitary disease which incorporates patient perceived bother related to the consequences of the disease, and their needs for support. Methods Items for the Leiden Bother and Needs Questionnaire for patients with pituitary disease (LBNQ-Pituitary) were formulated based on results of a recent focus group study (n = 49 items). 337 patients completed the LBNQ-Pituitary and six validated QoL questionnaires (EuroQoL-5D, SF-36, MFI-20, HADS, AcroQol, CushingQoL). Construct validity was examined by exploratory factor analysis. Reliabilities of the subscales were calculated with Cronbach’s alphas, and concurrent validity was assessed by calculating Spearman’s correlations between the LBNQ-Pituitary and the other measures. Results Factor analyses produced five subscales (i.e., mood problems, negative illness perceptions, issues in sexual functioning, physical and cognitive complaints, issues in social functioning) containing a total of 26 items. All factors were found to be reliable (Cronbach’s alphas all ≥.765), and the correlations between the dimensions of the LBNQ-Pituitary and other questionnaires (all P ≤ .0001) demonstrated convergent validity. Conclusions The LBNQ-Pituitary can be used to assess the degree to which patients are bothered by the consequences of the pituitary disease, as well as their needs for support. It could also facilitate an efficient assessment of patients’ needs for support in clinical practice. We postulate that paying attention to needs for support will lead to optimal patient care (e.g., improvement in psychosocial care), and positively affect QoL

Psychosocial problems in Parkinson's disease: Evaluation of a disease-specific questionnaire

Our objective was to evaluate the BELA-P-k, a questionnaire for measuring psychosocial problems and need for help in Parkinson's disease (PD) patients. The Belastungsfragebogen Parkinson kurzversion (BELA-P-k) was translated from German into Dutch. It consists of 19 items distributed over four subscales: achievement capability/physical symptoms, fear/emotional functioning, social functioning and partner-bonding/family, with a "Bothered by" (Bb) and a "Need for Help" (NfH) score. The BELA-P-k was tested for cultural differences, relevance, and feasibility in a pilot study (n = 10) and compared in a validation study (n = 54) with the Sickness Impact Profile, the COOP/WONCA Functional Health Assessment Charts and the Loneliness Questionnaire. All questionnaires were administered in person at home, in a prescribed order. The BELA-P-k was completed by 64 patients with PD. The internal-consistency reliability coefficients for the total Bb (0.90) and NfH (0.93) scales were excellent. The internal consistency of the subscales exceeded the 0.70 standard except for the "Bothered by partner-bonding/family scale" (0.61). Almost all BELA-P-k subscales correlated highly (P < 0.001) with the corresponding scales of the standard quality-of-life indices. There was no significant relationship between disease severity (Hoehn and Yahr) and the BELA-P-k. We conclude that the BELA-P-k is a relevant, reliable and valid measure for assessing psychosocial problems and need for help of PD patient

A disease-specific psychosocial questionnaire for Parkinson's disease caregivers

Objective To evaluate the "Belastungsfragebogen Parkinson Angehorigen - kurzversion" (BELA-A-k), a questionnaire for measuring psychosocial problems and need for help in Parkinson's disease (PD) caregivers. Methods The "Belastungsfragebogen Parkinson Angehorigen - kurzversion" was translated into Dutch. It consists of 15 items with a 'Bothered by' (Bb) and a 'Need for Help' (NfH) score. The BELA-A-k was tested for cultural differences, relevance and feasibility in a pilot (n = 10). We determined the psychometric properties in a validation study (n = 50) and compared the BELA-A-k with the Sickness Impact Profile, the COOP/WONCA Functional Health Assessment Charts and the Loneliness Questionnaire (de Jong-Gierveld). All questionnaires were administered in person at home, in a prescribed order. Results The BELA-A-k was completed by 60 PD-caregivers. The internal-consistency reliability coefficients for the total 'Bothered by' (0.90) and 'Need for Help' (0.92) scales were excellent. The internal consistency of the subscales exceeded the 0.70 standard except for the 'Bothered by' and 'Need for Help' Social functioning scale (Bb = 0.62; NfH = 0.65) and the Partner-bonding/Family scale (NfH = 0.69). Almost all BELA-A-k subscales correlated highly (P <0.001) with the corresponding scales of the standard quality of life indices. Conclusion The BELA-A-k is a relevant, reliable and valid measure for assessing psychosocial problems and need for help of PD-caregiver

Logistic regression model of employment status.

<p>The logistic regression model included employment status (paid job/no paid job) as dependent variable and physical functioning, physical impact of fatigue and memory as covariates. R² = 0.34 (Cox & Snell), 0.46 (Nagelkerke).</p

Demographic and disease characteristics of the study sample.

<p>Percentages (N) or means (± SD) are reported. ^aeducational level: (1) less than six years of primary education; (2) finished six years of primary education; (3) six years primary education and less than two years of low level secondary education; (4) four years of low level secondary education; (5) four years of average level secondary education; (6) five years of high level secondary education; (7) university degree. No significant group differences were found at p≤0.05.</p

Differences in self-reported functioning between patients with and without paid employment.

<p>Means (± SD) are reported. Mann-Whitney U and independent t-tests were used to examine group differences.</p