How do Dutch LFPC-patients experience their quality of life and are their case managers aware of these experiences?

Written by Sandra Schel
Junior Researcher, Pompefoundation, The Netherlands

Quality of life is seen as an important treatment goal in Dutch LFPC. Since 2007 QoL has been measured on a yearly basis at the LFPC-wards of the Dutch Pompefoundation, using the Forensic Inpatient Quality of Life Questionnaire (FQL; Vorstenbosch, Bulten, Bouman, & Braun, 2007). The FQL is a setting- and disease-specific questionnaire for QoL-assessment in long-care forensic psychiatry, which is based on patients’ and forensic psychiatric nurses’ experiences and their perceptions on quality of life (Vorstenbosch, Bulten, Bouman, & Braun, 2010). In Dutch LFPC every member of the forensic psychiatric nursing staff is linked to specific patients. Therefore, additionally, Vorstenbosch and colleagues developed a proxy version of the FQL, which consists of exactly the same questions, but then rephrased as to how the forensic psychiatric nurse assigned to the patient (henceforth: case manager) thinks the patient would answer.

The FQL is a psychometrically valid instrument (Vorstenbosch, Bouman, Braun, & Bulten, 2014) and consists of 114 subjective items which cover 15 domains: Activities, Leave, Residence, Nutrition, Hygiene, Health, Sexuality, Social Relations, Other Residents, Daily Staff, Affection, Autonomy, Self-actualisation, Finances and Religion. Because patients are forced to stay in the long-care, the FQL also contains an item about their acceptance of stay. The items are rated on 100 mm Visual Analogue Scales (VAS), on which patients indicated their level of agreement with the specific item (0 = total disagreement; 100 = total agreement).

As shown in figure 1, on average, patients are moderately satisfied with most QoL-domains (Schel, Bouman & Bulten, 2015). Patients are most content with the domain Hygiene, but are very unsatisfied with the domains Leave and Sexuality. These results have been found stable over time during the on-going longitudinal study between 2007 and 2013 for which the data were collected.

 

Figure 1. Patient mean scores for the QoL subscales, Overall QoL and Acceptance of stay (N= 68-77).

Sandra blog Table1

 

To examine the extent to which case managers are being aware of the way their patients experience their QoL, agreement on QoL-scores was investigated for seventy- seven pairs of patients and case managers (Schel, Bouman, & Bulten, 2015). Pairwise comparisons, using intra class correlations (ICC), showed poor agreement between patients’ and case managers’ QoL scores for half of the domains (Table 2). Moderate agreement was found on the other half of the domains, except for Leave, which was the only domain which patients and their case managers agreed on (Figure 2).

 

Figure 2. Agreement (ICC) between patients’ and case managers’ scores for the QoL subscales, Overall QoL and Acceptance of stay (N= 68-77).

 

Sandra blog Table2

 

According to these results, there is much room for improvement concerning case managers’ knowledge of their patients’ QoL. For example, hardly any agreement was found on the subjects Sexuality, Self-actualisation and Affection, which generally can be considered  taboo subjects in forensic psychiatry. On the other hand, patients and case managers had comparable scores on domain Leave, which is a frequently discussed theme using structured formats required by the ministry of justice. These findings might indicate that case managers could benefit from a training aimed at assessing QoL of their patients in a structured manner. For example, case managers could learn skills how to effectively discuss QoL subjects with their patients. However, investing in such training programmes will be quite a challenge in times when Dutch forensic psychiatry faces cutbacks in their care budgets, but it’s a challenge worth the effort for LFPC-patients!

 

References:

Schel, S.H.H., Bouman, Y.H.A., & Bulten, B.H. (2015). Quality of life in Long-term forensic
psychiatric care: Comparison of self-report and proxy assessments. Archives of Psychiatric Nursing, 29, 162-167.

Vorstenbosch, E.C.W., Bouman, Y.H.A., Braun, P.C., & Bulten, B.H. (2014). Psychometric properties of the forensic inpatient quality of life questionnaire: Quality of life assessment for long-term forensic psychiatric care. Health Psychology and Behavioural Medicine: An open An Open Access Journal, 2, 335-348.

Vorstenbosch, E.C.W., Bulten, B.H., Bouman, Y.H.A., & Braun, P.C. (2007). Forensic inpatient Quality of Life questionnaire, Nijmegen: Pompestichting.

Vorstenbosch, E.C.W., Bulten, B.H., Bouman, Y.H.A., & Braun, P.C. (2010). Kwaliteit van leven binnen de langdurige forensische psychiatrie. Maandblad Geestelijke Volksgezondheid, 11, 869-883.