Design Cross-sectional, cohort study.

Setting Monocentric, inpatient, university hospital.

Participants 52 patients with Parkinson’s disease (without dementia) analysed.

Primary and secondary outcome measures Motor function, nonmotor symptoms, health-related quality of life (QoL), and the Coping Strategies Questionnaire were assessed.

This observational study recruited consecutively people with Parkinson´s disease without dementia (PPD) from the ward of the Department of Neurology, Jena University Hospital, Jena, Germany (May 2019 to July 2019). This study was approved by the local ethics committee of the Jena University Hospital (4572-10/15). All subjects gave written informed consent in accordance with the Declaration of Helsinki. All patients came as planned to the hospital and received multimodal treatment by specialized therapists and medication modifications during their stay (German Multimodale Komplexbehandlung bei Morbus Parkinson). Prerequisite for the multimodal complex treatment are the physician expertise for PD, an anti-parkinsonian drug titration as well as the application of activating therapies with a duration of at least 7.5 h per week in a multidisciplinary team (physiotherapists, occupational therapists, and speech therapists, psychologist) (Richter et al., 2019).

Assessments were conducted at the beginning of the hospital stay (before treatments started). The patients were admitted for the following reasons: an increase in fluctuations, an increase in off phases, evaluation for deep brain stimulation, and worsening of gait and freezing. Only patients without relevant cognitive deficits according to the Montreal Cognitive Assessment (MoCa > 21) were included (Nasreddine et al., 2005).

Assessments

The following demographical and PD-related data were collected: age, gender, marital status, and living situation. In addition the following parameters were assessed, because they were found to be related to coping in PD in an earlier study (Liebermann et al., 2020):  The Movement Disorder Society-sponsored revision of the Unified Parkinson’s Disease Rating Scale III (MDS-UPDRS III) (Goetz et al., 2007), the revised nonmotor symptoms questionnaire (NMS-Quest) (Romenets et al., 2012), and Hoehn and Yahr staging were used to evaluate motor and nonmotor symptoms; cognition was assessed using the MoCa and depression was assessed using the Beck Depression Inventory II (BDI-II). The Medical Outcomes Study (MOS) Short Form 36 (SF-36) was used to measure health-related QoL (Ware and Sherbourne, 1992, McHorney et al., 1994). The SF-36 is recommended for people with PD (Martinez-Martin et al., 2011) and comprises eight concepts of health: physical functioning, role limitations due to physical problems, pain, general health perceptions, energy/vitality, social functioning, role limitations due to emotional problems, and mental health. Single-dimension scores were calculated according to the predefined standardized scoring algorithms based on the following the instructions given by RAND Health Care (www.rand.org/health-care/surveys_tools/mos/36-item-short-form/scoring.html). Scoring was used according to which items from each scale are summed and rescaled with a standard range from 0 to 100, where a score of 100 denotes the best health.

For pain ratings, the corresponding SF-36 was used: item 21 (How much bodily pain have you had during the past 4 weeks?) and item 22 (During the past 4 weeks, how much did pain interfere with your normal work (including both work outside the home and housework)?); lower scores indicate greater pain.

Coping with pain was assessed using the Coping Strategy Questionnaire (CSQ) (https://igptr.ch/wp-content/uploads/2019/09/CSQ-D.pdf). This is a widely used, validated international questionnaire for pain management strategies which includes both active/passive and cognitive/behavioral coping strategies and perceived efficacy of the used coping strategies (Verra et al., 2006). The CSQ was developed by Rosenstiel and Keefe in 1983 and is currently the most widely cited international questionnaire for pain management strategies (Rosenstiel and Keefe, 1983). The German version, the CSQ-D, was developed in Switzerland in 2006 (Verra et al., 2006). The CSQ-D comprises a list with 50 examples of pain management of interviewed patients. The patient must assess what he or she does when in pain and circles the number that applies to him or her. Therefore, the respondent does not necessarily have to be in current pain. The patient assesses each item on a seven-point Likert scale from 0 to 6. The score of a scale is the mean value of the filled items. The score for each scale was transformed into a score from 0 as the worst to 100 as the best: (score/6) × 100. The higher the score, the more significant the factor in the process of coping with pain. The CSQ-D consists of eight scales, each with six items (items 1–48) (Verra, 2007, Verra et al., 2006): The coping strategies diverting attention, reinterpreting pain, coping self‐statements, ignoring pain sensations, and increasing activity level were characterized as active, whereas catastrophizing and praying or hoping were categorized as passive. Items 49 (pain control) and 50 (pain reduction) are scored individually and measure the effectiveness of pain management, less the pain management strategy. The two questions about controlling pain and decreasing pain were categorized as perceived efficacy of the used coping strategies.

References

1. Richter D, Bartig D, Muhlack S, Hartelt E, Scherbaum R, Katsanos AH, et al. Dynamics of Parkinson's Disease Multimodal Complex Treatment in Germany from 2010(-)2016: Patient Characteristics, Access to Treatment, and Formation of Regional Centers. Cells. 2019;8(2).

2. Nasreddine ZS, Phillips NA, Bedirian V, Charbonneau S, Whitehead V, Collin I, et al. The Montreal Cognitive Assessment, MoCA: a brief screening tool for mild cognitive impairment. Journal of the American Geriatrics Society. 2005;53(4):695-9.

3. Liebermann JD, Witte OW, Prell T. Association between different coping styles and health-related quality of life in people with Parkinson's disease: a cross-sectional study. BMJ Open. 2020;10(7):e036870.

4. Goetz CG, Fahn S, Martinez-Martin P, Poewe W, Sampaio C, Stebbins GT, et al. Movement Disorder Society-sponsored revision of the Unified Parkinson's Disease Rating Scale (MDS-UPDRS): Process, format, and clinimetric testing plan. Movement disorders: official journal of the Movement Disorder Society. 2007;22(1):41-7.

5. Romenets SR, Wolfson C, Galatas C, Pelletier A, Altman R, Wadup L, et al. Validation of the non-motor symptoms questionnaire (NMS-Quest). Parkinsonism Relat Disord. 2012;18(1):54-8.

6. Ware JE, Jr., Sherbourne CD. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care. 1992;30(6):473-83.

7. McHorney CA, Ware JE, Jr., Lu JF, Sherbourne CD. The MOS 36-item Short-Form Health Survey (SF-36): III. Tests of data quality, scaling assumptions, and reliability across diverse patient groups. Med Care. 1994;32(1):40-66.

8. Martinez-Martin P, Jeukens-Visser M, Lyons KE, Rodriguez-Blazquez C, Selai C, Siderowf A, et al. Health-related quality-of-life scales in Parkinson's disease: critique and recommendations. Movement disorders: official journal of the Movement Disorder Society. 2011;26(13):2371-80.

9. Verra ML, Angst F, Lehmann S, Aeschlimann A. Translation, cross-cultural adaptation, reliability, and validity of the German version of the Coping Strategies Questionnaire (CSQ-D). J Pain. 2006;7(5):327-36.

10. Rosenstiel AK, Keefe FJ. The use of coping strategies in chronic low back pain patients: relationship to patient characteristics and current adjustment. Pain. 1983;17(1):33-44.

11. Verra M. Die Schmerzbewältigung erfassen. physiopraxis. 2007;5(07/08):40-1.

Detailed description of parameters is given in the readme file.