Deep Brain Stimulation (DBS) of mainly the subthalamic nucleus (STN) has become an established surgical procedure for patients with advanced Parkinson’s disease (PD) [
Nevertheless, it is not unusual that the beneficial effect of DBS is mitigated by various side-effects such as dysarthria, decrease in verbal fluency, and changes in behaviour, fatigue, and depression [
Research on the decision-making process of patients having already undergone DBS for PD had shown in retrospect that the individual patient’s knowledge about (and attitude towards) DBS had been crucial for their final decision to undergo DBS [
The aim of this qualitative study was to explore, in female and male patients with medically treated, moderately advanced PD, their knowledge, feelings, and reasoning about DBS.
In order to enroll in this study patients who may have had reason to consider DBS as a treatment alternative, a strategic selection was used: a nurse specialized in PD at Umeå University Hospital helped us to identify patients with PD who despite high and/or frequent doses of dopaminergic medication experienced difficult symptoms and problems in daily life. There were 36 patients (23 males, 13 females) who fulfilled these criteria. Information about the study was sent to them and they were asked if they agreed to participate in an interview. One reminder was sent to those who did not answer. Twenty-one patients (14 men) accepted to be interviewed. One 80-year-old patient was excluded since he would not have been eligible for DBS due to high age. Three additional women were recruited along the same criteria after contact with Parkinson’s Disease Society. Table
Sociodemographic and clinical characteristics of 23 participants (10 women) with Parkinson’s disease.
Whole group | Men (%) | Women (%) |
| |
---|---|---|---|---|
Number of Participants | 23 | 13/(56.5) | 10 (43.5) | |
Age | Mean ± SD (range) | Mean ± SD (range) | Mean ± SD (range) | |
Age at diagnosis |
|
|
|
ns |
Years since diagnosis |
|
|
|
ns |
Age at interview |
|
|
|
ns |
LEDD (mg) |
|
|
|
ns |
Number of daily doses |
|
|
|
0.045 |
Number (%) of patients who needed assistance in some daily activities | 13 (56.5) | 9 (69.2) | 4 (40) | |
Civil status |
|
|
|
|
Cohabitant/single | 19 (83)/4 (17) | 11 (85)/2 (14) | 8 (80)/2 (20) | |
Level of education |
|
|
|
|
Primary school | 5 (21.7) | 3 (23.1) | 2 (20.0) | |
High school | 7 (30.4) | 4 (30.8) | 3 (30.0) | |
University | 11 (47.8) | 6 (46.2) | 5 (50.0) | |
Employment status at time of interview |
|
|
|
|
Working full time | 1 (4.3) | 1 (7.7) | 0 | |
Working part time & sick-leave part time | 7 (30.4) | 2 (15.4) | 5 (50.0) | |
Sick-leave full time | 8 (34.8) | 4 (30.8) | 4 (40.0) | |
Retired | 7 (30.4) | 6 (46.2) | 1 (10.0) | |
Perceived general health at time of interview |
|
|
|
|
Excellent | 1 (4.5) | 0 (0.0) | 1 (10.0) | |
Very good | 5 (22.7) | 3 (25.0) | 2 (20.0) | |
Good | 5 (22.7) | 2 (16.7) | 3 (30.0) | |
Fair | 10 (45.5) | 7 (58.3) | 3 (30.0) | |
Bad | 1 (4.5) | 0 (0.0) | 1 (10.0) | |
Overall impact of PD on life at time of interview |
|
|
|
|
Mild | 1 (4.3) | 1 (7.7) | 0 | |
Moderate | 22 (95.7) | 12 (92.3) | 10 (100.0) | |
Severe | 0 | 0 | 0 | |
Number of members of PD society (%) | 19 (82.6) | 11 (84.6) | 8 (80.0) |
L-dopa = Levodopa.
LEDD = Levodopa equivalent daily doses.
The local ethical board at Umeå University approved the study, and all patients gave written informed consent before the interview (D.No: 2012-36-32M).
Data were collected through qualitative interviews [
Each interview lasted 60–140 minutes and was digitally recorded and transcribed verbatim.
In addition to the interview, each participant completed a short questionnaire about sociodemographic information. The patients were also asked to assess the overall impact of PD on their health by answering the questions
The patients’ Levodopa equivalent daily doses (LEDD) at time of the interview were obtained from the patients’ medical record.
According to qualitative research design [
The main analysis of the interviews was made according to the constant comparison technique in Grounded Theory [ In a first phase all researchers separately read and coded three interviews and then met to compare codes and discuss content and meaning of the participants’ experiences. Case narratives summarizing the essentials of each interview were written down. Another three interviews were then coded, compared, and summarized, and this process of sorting the data continued until all interviews were worked through and summarized in case narratives. In a second phase all interviews were reread by the first author and passages that concerned the participants’ thoughts, reflections, and utterances about future treatment and DBS were identified, cut out, and organized in separate Thereafter the “ Finally the whole interviews were reread to ensure that the categories and interpretations could be recontextualized into the interviews, that is, that the results were grounded in the data.
Descriptive continuous variables were presented as average ± standard deviation and range by use of the SPSS for Mac 21.0. A
Table
The participants displayed interest and engagement in the interview. They described in detail their symptoms and how these impacted on their everyday life. The most common symptoms reported by the patients were in various combinations: shaking, stiffness, wear-off and fluctuations, involuntary movements, cramps, fatigue, gait problems, low mood, and sensitivity to stress. There were no differences in symptom profile between men and women.
With respect to DBS, all participants were knowledgeable about it, and shared their views and reflections about DBS as a potential additional treatment. The sources of their knowledge were information from (and discussions with) medical staff, as well as information from the Internet, from watching TV-programs and by reading newsletters published by the patients’ society. Several participants had also met other people who had undergone DBS for PD.
The analysis of the interviews resulted in the core category “Processing DBS: balancing symptoms, fears and hopes.” This core category was underpinned by two main categories: “
A core category underpinned by two main categories. Each main category is supported by three and four subcategories, respectively.
Core |
Processing DBS: balancing symptoms, fears and hopes | |
---|---|---|
Main categories | Neurosurgical treatment requires |
Timing of concurrent issues of importance for DBS |
|
||
Subcategories | (1) |
(1) |
The participants’ main opinion about DBS as a treatment alternative was that DBS was not on their agenda for the time being. However, most of our interviewees considered that DBS might become an alternative later due to progress of the disease or to drawbacks and inefficacy of medication. Their current situation and the degree of difficulties that they experienced in daily life, as well as their hopes for research and discoveries of new and better treatment options for PD, also impacted on the way women and men reasoned about eventual DBS treatment.
Some of the participants’ considerations consisted of more general expressions about surgery being something that always could pose a risk, whereas other concerns were more specifically related to the surgical procedure per se, such as being attached to the surgical equipment. Such thoughts implied feelings of uneasiness, as phrased by Mr. 10, “
Another common perception among the interviewed patients was that after DBS some patients seemed to need higher and more frequent doses of medication. The participants regarded this as a negative outcome of DBS. Ms. 14 said,
Three women reported that they had found it difficult to consider DBS surgery when their clinician suggested it early in the course of the disease, and when one of them was referred to the DBS team, she declined to undergo the presurgical evaluation. Six of the men had been offered DBS and two of them declined to undergo presurgical screening. Among the four men who were assessed in view of DBS, two were not found to be ill enough, while the two others eventually understood that they were not considered suitable due to early signs of cognitive decline. Both of them expressed that it would have been easier to accept the denial of DBS had they received a careful explanation of the reasons, as exemplified by Mr. 1: “
Still, bringing up the issues about DBS was considered highly relevant for two of the male participants and they were awaiting the right moment to bring it up themselves, as Mr. 12 put it:
However, even if most participants hoped for breakthroughs in research they underlined that research takes time and Mr. 4 confessed that he nowadays had low expectations:
The aim of this interview study was to explore attitudes towards (and perceptions of) DBS, among women and men with medically treated, moderately advanced Parkinson’s disease, who could have had reasons to consider DBS as a treatment option. The most interesting findings were that both women and men were quite knowledgeable about DBS but they did not feel that DBS was an option for them for the time being. They had respect for DBS as being a serious surgical procedure done on the brain, and they considered that it should be kept as a last resort. They were also aware of its side-effects such as impaired balance and personality changes. In contrast to what has been reported in the literature [
How come that our patients showed more reserved and less enthusiastic attitudes towards DBS than what one can commonly find in the literature? [
Earlier studies have shown that, in relation to the gender prevalence of PD, women are underrepresented among those treated with DBS [
For this study, near half of the patients who were invited to participate either declined the invitation or did not reply. This may have introduced a selection bias in favor of patients who are more outgoing and willing to discuss their disease and attitudes to DBS. Additionally, our participants are all living in Sweden and the results may not be applicable elsewhere.
In conclusion, our study showed that patients with moderately advanced PD who would be potential candidates for DBS had indeed good knowledge about the pros and cons of this treatment modality and expressed a realistic view about its potential limitations. They were not ready yet to submit to “early” DBS; they perceived DBS as a last resort that should be carefully considered only if absolutely needed. There were no differences between men and women concerning their reasoning and attitude towards DBS.
All authors declare no conflicts of interest.
The authors thank the participants for giving them of their time to conduct the interviews. This study was supported by The Swedish Research Council and The Parkinson Foundation in Sweden.