Is psychotherapy for functional somatic syndromes harmful? A mixed methods study on negative effects

[Dolphin]

http://www.jpsychores.com/article/S0022-3999(17)30067-3/fulltext

Is psychotherapy for functional somatic syndromes harmful? A mixed methods study on negative effects

Research Clinic for Functional Disorders and Psychosomatics, Aarhus University Hospital, Aarhus, Denmark

DOI: http://dx.doi.org/10.1016/j.jpsychores.2017.05.010

A.F. Holsting
,
H.F. Pedersen
,
M.T. Rask
,
L. Frostholm
,
A. Schröder

• 
  

Highlights

• •Overall low frequencies of specific negative effects were found.
• •One out of eight participants reported feeling dependent on their therapist.
• •Negative effects occurred both within and outside the therapeutic context.

Abstract
Introduction
Concern for negative effects of psychotherapy for functional somatic syndromes (FSS) has been expressed by clinicians and some patient associations, which may prevent patients from seeking treatment. Therefore, we sought to explore the occurrence and characteristics of negative effects from group-based psychotherapy as experienced by patients with severe or multiple FSS.

Methods
An adapted version of the explanatory sequential mixed methods design was applied. We used data from an on-going pilot study on Acceptance and Commitment Therapy and Mindfulness-Based Stress Reduction. Negative effects were measured by Inventory for the assessment of Negative Effects of Psychotherapy (INEP). In addition, telephone interviews were conducted with randomly chosen patients and patients who reported negative effects. The latter were asked to elaborate on their INEP response. Quantitative data were analysed descriptively while interview transcripts were explored by thematic analysis.

Results
Eighty patients responded to the questionnaire (89%). Negative effects to different extent (from ‘slightly agree’ to ‘fully agree’) were reported by 25 (31%). The most frequent negative effects were dependence on the therapist (12%), feeling down after therapy (6%) and insurance problems (7%). By exploring 27 participants' experiences of negative effects 3 main themes were identified: relations in therapy, outcome and transition from therapy to everyday life.

Conclusion
Patients with FSS reported a few specific negative effects, all with low frequency. Generally, therapy was well-received. Some patients did however express negative effects both within and outside the therapeutic context. It is important to inform patients about potential negative effects prior to psychotherapy.


Keywords:
Functional somatic syndromes, Negative effects, Mixed methods, Psychotherapy

 

[Dolphin]

While many studies have focused on the positive outcome of psychotherapy for FSS, little is known about negative effects [17]. Concern for negative effects is however expressed among patient associations for FSS [18], which may prevent patients from seeking treatment. Studies from different clinical populations indicate deterioration among 3-10% after psychotherapy [19-21]. A reanalysis of randomized controlled trials on CBT for chronic fatigue syndrome (CFS) yielded similar results [22]. At the same time, results showed that physical deterioration and psychological distress were neither more severe nor more frequent in the CBT groups compared to controls [22]. The PACE trial, a large multi-centre study showed that CBT for CFS was not associated with greater risk for deterioration or serious adverse reactions compared to other treatments and specialized medical care alone [11,23]. Thus, the few studies that have investigated negative effects do not support concerns for deterioration of FSS caused by psychological treatment.

We used data from an on-going pilot study on Acceptance and Commitment Therapy and Mindfulness-Based Stress Reduction.

These therapies are not specifically oriented towards graded activity so I'm not sure the findings are that relevant in terms of the discussions about graded activity-oriented therapies for ME/CFS.

This was group therapy. I think that is a lot less intensive than individual therapy so might be associated with fewer problems, though there could also be some extra problems that arise from the group environment.

 

[Dolphin]

A.F. Holsting, H.F. Pedersen, Ph.D., M.T. Rask, Ph.D., L. Frostholm, Ph.D. & A. Schröder, M.D. Ph.D.

Research Clinic for Functional Disorders and Psychosomatics
Aarhus University Hospital, Aarhus, Denmark

Corresponding author:
Andreas Schröder
Nørrebrogade 44, 8000 Aarhus C,
Email: andreas.schroeder@aarhus.rm.dk

Contact information for remaining authors:
Anna Frøkjær Holsting
Email: annhoi@rm.dk
Heidi Frølund Pedersen
Email: heidpers@rm.dk
Mette Trøllund Rask
Email: merask@rm.dk
Lisbeth Frostholm
Email: lisbfros@rm.dk

All the authors appear to be from the clinic. This could bring in a bias in terms of both what patients might be willing to report to them and also what the authors are willing to report. On certain occasions I was left wondering where these really the worst examples they could find.

This is what they said on this.

Third, the patients were still in contact with the clinic when they participated in the study. They may therefore have been disinclined to report negative effects that could be seen as a critique of the treatment or the therapists, especially if they found treatment helpful overall [51]. Interviews were however confidential and the interviewer (AFH) was not involved in clinical assessment or treatment.

 

[Dolphin]

Negative effects from psychotherapy, however, go beyond deterioration. Studies from different clinical populations suggest that negative impact on different life domains is not unusual [24-27]. In qualitative inquiries, clinicians recognize that psychotherapy can cause negative effects such as dependency, new symptoms, strains in the patient-therapist relationship, and hopelessness in case of non-response [28-30]. Other examples of possible negative effects are stigmatization and relationship problems [31,32]. Such negative effects may easily be overlooked when treatment is beneficial regarding the target problem [33]. Furthermore, these negative effects can be ambiguous and different meanings can be attached to them depending on the eye of the beholder [34].

 

[Dolphin]

MBSR focuses on mindful awareness through mindful meditation, body scanning and simple yoga postures, and patients are expected to engage in daily meditation practice [37]. ACT focuses on acceptance of inner experiences (symptoms, negative thoughts, and emotions), and aims to increase psychological flexibility [38]. Patients identify core values and commit to them through behavioural action between sessions. The treatment consists of 6-7 sessions each of 3 hours’ duration (i.e. 18-27 hours in total).

 

[Dolphin]

Negative effects.

The Inventory for the assessment of Negative Effects of Psychotherapy (INEP)[26] contains 21 items covering e.g. relationships problems, dependence on the therapist, and financial worries. Of the 21 items, 6 items are about maltreatment/ethical violations, e.g. “my therapist broke confidentiality”. Respondents are asked to indicate on a 4-point scale to what extent they agree or disagree with these statements. Other items are answered on a 3-point scale, e.g. “I feel…”: “better”, “unchanged/not applicable” or “worse”. Except for items on maltreatment/ethical violations, responses are attributed to either therapy or other circumstances. INEP was backtranslated from the original version, the reliability score of which is α = 0.86 [26].

Appendix B lists each of the 21 questions and the percentages in each category.

 

[Dolphin]

Interview procedure

Before the telephone interview, participants were informed by e-mail that the main subject was negative effects from psychotherapy and that the interview would last about 30 minutes. In one case, the interview was conducted face-to-face as desired by the participant. The interviews followed a semi-structured interview guide focusing on negative experiences during therapy and negative life changes caused by therapy (Appendix A). Participants were asked to relate answers to their latest group treatment at the clinic. Furthermore, participants who had stated negative effects on INEP were specifically asked to elaborate on these experiences. Interviews were digitally recorded and verbatim transcribed.

Appendix A lists all the questions.

 

[Dolphin]

I found this confusing:

One participant explained that she had a period, where she felt down after therapy due to the therapist’s approach, which challenged her own understanding of her situation:

“What I’ve found a bit hard is that sometimes I’ve felt worse, made worse than I am (…) you can sort of get caught up in… ”well, yes I feel so bad” and that’s perhaps not exactly my approach to life (…) I have a bit more drive, you know”. (participant 13)

 

[Dolphin]

I found this one of the more interesting comments. There are extra cognitive problems in functional somatic syndromes like chronic fatigue syndrome.

Other negative experiences were related to situations in therapy, where participants felt their concerns were brushed aside by the therapist without sufficient room for discussion. This was described as frustrating and hurtful. A few of the participants explained that in these situations, they were encouraged by the therapists to accept life circumstances, while the participants on the other hand needed a different problem-solving approach. One participant described it like this:

”Sometimes when …if I sometimes said that ... it stresses me that I really don’t remember very well…”That’s part of being human” they’d sometimes say… (…) Then I’m a bit like.….I need to go a bit deeper and work with things.” (participant 14)

 

[Dolphin]

Functional somatic syndromes (FSS) b,c

Irritable bowel syndrome 32.9 % (26)
Chronic fatigue syndrome 60.8 % (48)
Fibromyalgia 74.7 % (59)
Tension headache 58.2 % (46)
Non-cardiac chest pain 40.5 % (32)
Mean number of FSS 3.6 (0.6)

I have wondered from other things such as a high prevalence they found in a population study whether they were defining chronic fatigue syndrome loosely.

 

[Dolphin]

I thought this was a little interesting. People with some chronic illnesses such as CFS can have reduced energy availability meaning they have to be careful in how they use their energy.

Influenced by other patients

It was valuable to be in a group with other patients since it made the participants’ situation feel less lonely. At the same time, a few participants found it difficult to contain other patients’ stories. A participant explained how she felt when hearing about the suffering of another patient in the group:

”She was struggling with so many things, and I just felt like …I can’t cope with this. It’s too intense. My own stuff is plenty … compared to what I struggle with (…) I simply had to withdraw myself from the situation, and I couldn’t really be present at the table” (participant 20)

 

[Dolphin]

I thought this was a little interesting.

Insurance problems or worries due to therapy were reported by 7% of the participants. This is comparable to findings in one earlier study [27], but less than in the study by Ladwig et al. where 18% reported such negative effect [26]. Some interview participants in the present study regarded the diagnoses obtained at the clinic as a potential barrier for obtaining insurance, which may explain why some attributed insurance problems to therapy in the INEP. Generally, we found insurance problems not to be related to the psychological treatment.

 

[Dolphin]

Implications

In addition to potential treatment benefits, patients should be informed about the possible negative effects that some patients may experience. This may incline patients to discuss negative effects with their therapist if they have such experiences [52]. Furthermore, we found that about every eight patient reported feeling dependent on their therapist. Clinicians should be aware of the challenges and strain that ending therapy may bring for the patient

I don't think that this tends to happen with nonpharmacological interventions for CFS.

 

[Dolphin]

I thought this was a little interesting.

Intimate relationships

My partner and I experience more conflicts.
4.8 % (3)b

-Tension in nearest relations

It's because I've started to put my foot down (…). So when I'm more present in the moment and feel what is good and
bad for me, I react to the bad things (participant 13)

 

[Dolphin]

I wonder were there more interesting things said on this. Certainly if you asked a wider group I imagine there is a good chance a lot of things will be said on this.

Maltreatment

I feel hurt by what my therapist told me.

5.0 % (4) -

Incongruity in patient-therapist relationship

And I felt completely run over. They could at least have asked "why do you say that?" (participant 13)

 

[Dolphin]

Stigma I have troubles finding insurance or am anxious to apply for insurance

7.5 % (6)

Concerns generally not attributed to therapy - therefore not related to the qualitative themes

If I were to have a health insurance with "danmark" - a physiotherapist told me that I couldn't because of my diagnosis. It's not so much because of the treatment (participant 20)

 

[Rick Sanchez]

I have wondered from other things such as a high prevalence they found in a population study whether they were defining chronic fatigue syndrome loosely.

Ah yes. Forskningsklinikken for Funktionelle lidelser.

Sadly, being from Denmark I am somewhat of an expert on this area.

These guys, especially Fink and Schröder (who is also as obnoxious as he is arrogant) are complete wackos, who do not believe ME/CFS to be a separate disease entity at all. Instead they actually claim that different completely distinct illnesses like Whiplash, irritable bowel syndrome and ME/CFS are all actually the same disease ''Bodily Distress Syndrome'', and they claim they can prove this by showing that the different diseases / syndromes share symptoms in severely sick patients.

Regarding their definition.... They claim that they use the Fukuda criteria when diagnosing ME/CFS patients, but of course it all becomes very murky and weird, since they don't actually believe that ME/CFS exists as a separate entity at all. In fact they believe it is a complete waste of time, and an annoyance to deal with ME/CFS separately, and when they do deal with ME/CFS it is only to provide evidence that the disease doesn't exist as a separate illness.

If you look at the study numbers you will notice that a large part of patients with ME/CFS will also have some of the other functional somatic disorders, which in my personal opinion means that they most likely do not use the Fukuda criteria at all, or have a very broad interpretation of the criteria.


They actually wrote a letter to the editor when IOM published their 2015 ME/CFS report available @ http://jamanetwork.com/journals/jama/article-abstract/2382974. It makes for entertaining reading if you have a twisted sense of humor.

 

[JaimeS]

Same Fink who sectioned Karina?

 

[Luther Blissett]

Same Fink who sectioned Karina?

Yep. Per Fink.

 

[IreneF]

So, was the therapy successful? Were the patients cured?