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Internet-Based Therapy for Adolescents With Chronic Fatigue Syndrome: Long-term Follow-up (2013)

Dolphin

Senior Member
Messages
17,567
Internet-based therapy for adolescents with chronic fatigue syndrome: long-term follow-up.

Pediatrics. 2013 Jun;131(6):e1788-95. doi: 10.1542/peds.2012-2007. Epub 2013 May 13.

Nijhof SL, Priesterbach LP, Uiterwaal CS, Bleijenberg G, Kimpen JL, van de Putte EM.

Source
Department of Pediatrics, University Medical Center Utrecht, Utrecht, Netherlands. s.l.nijhof@umcutrecht.nl

Abstract

OBJECTIVE:

Cognitive behavioral therapy (CBT) is known to be an effective treatment of adolescents with chronic fatigue syndrome (CFS), but its availability is limited.

Fatigue in Teenagers on the Internet (FITNET), an Internet-based CBT program for adolescents with CFS, has been developed as an alternative to face-to-face CBT.

Recently, its short-term effectiveness has been proven in a randomized clinical trial. Here we aimed to assess the long-term outcome of CFS in adolescents after FITNET treatment and after usual care.

In addition, factors related to recovery at long-term follow-up (LTFU) for adolescents treated with the FITNET program were investigated.

METHODS:

The study was an LTFU of participants of the FITNET trial. Data were completed for 112 (88.2%) of 127 approached FITNET study participants.

Primary outcomes were fatigue severity (Checklist Individual Strength-20), physical functioning (87-item Child Health Questionnaire), and school/work attendance.

RESULTS:

After a mean follow-up of 2.7 years, 66 (58.9%) adolescents had recovered from CFS.

Most adolescents who recovered directly after treatment with FITNET were still recovered at LTFU. At LTFU there was no difference between the recovery rates for the different treatment strategies (original randomization: FITNET [64%] versus any form of usual care [52.8%]).

Per additional month of "pretreatment disease duration," the odds for recovery were 4% lower (odds ratio: 0.96; 95% confidence interval: 0.93-0.99; P = .016), and per added point on "focus on bodily symptoms" (Body Consciousness Scale) of the mother (0-20 points) the odds for recovery were 11% lower (odds ratio: 0.89; 95% confidence interval: 0.80-0.99; P = .029).

CONCLUSIONS:

The short-term effectiveness of Internet-based CBT on adolescent CFS is maintained at LTFU.

At LTFU, usual care led to similar recovery rates, although these rates were achieved at a slower pace.

KEYWORDS:
FITNET, Fatigue in Teenagers on the Internet, Internet, adolescents, chronic fatigue, cognitive behavioral therapy, follow-up, functioning, recovery



PMID: 23669515 [PubMed - indexed for MEDLINE]


The original paper is discussed in this thread: http://forums.phoenixrising.me/index.php?posts/360343/. I see a few people have posted about the follow-up paper. However, that's all the way down in message #149.

I missed the opportunity to post an e-letter on this paper (they have to go in within three months of publication) but would like some observations to show up on search engines and the like. So thought I'd be best to have a separate thread.
 

Dolphin

Senior Member
Messages
17,567
Possibly the most interesting statistic in this paper isn't in the abstract
At LTFU*, receiving FITNET therapy did not significantly influence recovery rates (followed FITNET [58.2%] versus no FITNET [53.6%], P = .515).

*Long-term Follow-up

---

The figures in the abstract are further apart:
At LTFU there was no difference between the recovery rates for the different treatment strategies (original randomization: FITNET [64%] versus any form of usual care [52.8%]).
But the 52.8% group includes people who had undergone FITNET at that stage.


Background info:
LTFU of Treatment Effects
The mean (6SD) follow-up period was 2.7 6 0.5 years (range: 1.7–3.8 years).
 

Dolphin

Senior Member
Messages
17,567
The same questionable definition of recovery is used as in the first paper. This means the points in the two published letters are still relevant. Both are available for free:



Lancet. 2012 Aug 11;380(9841):561; author reply 562. doi: 10.1016/S0140-6736(12)61324-5.
Internet-based CBT for adolescents with chronic fatigue syndrome.
Kindlon T.
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(12)61324-5/fulltext



Lancet. 2012 Aug 11;380(9841):561-2; author reply 562. doi: 10.1016/S0140-6736(12)61325-7.
Internet-based CBT for adolescents with chronic fatigue syndrome.
Crawford J.
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(12)61325-7/fulltext
 

Dolphin

Senior Member
Messages
17,567
TABLE 2 Follow-up Results at 12-Month and LTFU Assessments
is frustrating.

They just give the figures for the various measures for the "recovered" and "non-recovered" groups. That is to say, we can't compare the FITNET-recovered with the others that claimed to be recovered.

In the original paper, we could and the results for the FITNET-recovered weren't as good as the others that claimed to be recovered, or healthy controls, as the two published letters highlighted.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
My conclusion was that there was no significant difference between patients receiving FITNET and patients receiving ‘usual care’, at long-term follow-up. (FITNET reportedly sped up improvement, but didn't increase improvement.)
 

Dolphin

Senior Member
Messages
17,567
Definition of Recovery

Recovery from CFS was defined in relation to healthy peers (62 SD) and in accordance with the FITNET trial.10 This combined end point consisted of a fatigue-severity score <40, a physical functioning score of >=85%, school/ work presence of >=90%, and an SRI [self-rated improvement] answered with (1) “I have completely recovered” or (2) “I feel much better.”

As I mentioned, the letters cover a lot of points regarding this definition. Unfortunately they don't cover all the points raised in the original thread i.e. drawing attention to the question on self-rated improvement

The original paper lists the wording in more detail:

[Recovery requires answering] “yes” to the statement “I have completely recovered” or “I feel much better but still experience some symptoms”
Can't put my hands on more details on the other two options apart from "have the same complaints", or
"have become worse".

Seems odd to me that somebody would say that they weren't "completely recovered" and be counted as recovered. I think data on people who just say they have "completely recovered" would be interesting.
 

Dolphin

Senior Member
Messages
17,567
They don't give any data on using more strict recovery criteria ( >1 SD vs >2 SD) except to say:

Analyses at other cutoff points (>1 SD) obviously changed the number of recovered patients (57 instead of 66) but did not materially change our findings concerning the relative effects (FITNET compared with usual care; data not shown).

Note that 66 is out of 112. So this represents 58.9% and 57 represents 50.9% (i.e. using >1 SD threshold, 50.9% would be classed as recovered). It doesn't break it down between the FITNET and usual care groups.

In the original paper, the effect of using the >2SD threshold over the >1SD threshold was greater (63% vs 36%).
 

Dolphin

Senior Member
Messages
17,567
A number of adolescents experienced a relapse during the follow-up period. Within the FN group, 5 (8.5%) adolescents, who were recovered at 12-month assessment, no longer met recovery criteria at LTFU. Within the XO [cross-over] group, 4 (16%) relapses occurred, and 3 were within the UC [usual care] group (10.7%).
These seem not too bad.
However, I think this is somewhat misleading. These figures/percentages don't necessarily represent the "number of adolescents [who] experienced a relapse during the follow-up period". These figures/percentages relate to a single timepoint: some of the other people could have had relapses but just at the timepoint of the follow-up measurement they could be classed as recovered.
 

Dolphin

Senior Member
Messages
17,567
This seems like it might be questionable that those working part-time should be classed as recovered, but the numbers are small so might not make a huge difference:
Most adolescents were still going to school at the time of LTFU, although some adolescents had started their working careers (n = 10). Only 3 (30%) of the adolescents with a job were currently working full-time. However, 70% of the adolescents were satisfied with working a part-time job and worked as many hours as they liked, unrestrained by CFS (results from general questionnaire, work-related items).
---
The mean age of the participants at LTFU was 18.5 +/- 1.5 years.
so calling them adolescents is a bit odd.
 

Dolphin

Senior Member
Messages
17,567
They haven't adjusted for checking for lots (16!) of factors in
TABLE 3 Factors Related to Recovery After FITNET Treatment at LTFU

They looked at 16 things but only two were significant at p<0.05 (at p=0.02 and 0.03). (So, for example, using p<0.01, none would be significant).

Adolescent

Age at diagnosis
Gender
Disease duration (months)
Fatigue severity (CIS-20; range: 8–56)
Physical functioning (CHQ-CF87; range: 0%–100%)
Depression score (CDI; range: 0–54)
Anxiety score (STAIC; range: 20–60)
Somatic complaints (CSI; range: 0–140)
Self-efficacy (SES-28; range: 0–28)
Focus on fatigue (IMQ; range: 0–54)


Mother

Fatigue severity (CIS-20; range: 8–56)
Psychological stress (BSI; range: 0–4)
Focus on physical sensations (BCS; range: 0–20)


Father

Fatigue severity (CIS-20; range: 8–56)
Psychological stress (BSI; range: 0–4)
Focus on physical sensations (BCS; range: 0–20)


N = 84. BCS, Body Consciousness Scale; BSI, Brief Symptom Inventory; CDI, Children’s Depression Inventory; CSI, Children’s Somatization Inventory; IMQ, Illness Management Questionnaire; SES-28, Self-Efficacy Scale–28; STAIC, State-Trait Anxiety Inventory for Children.
---
They also did not confirm some earlier findings:
We could not confirm an association between older age, poor mental health,15 or higher maternal fatigue severity16 with an inferior outcome.

Note: this analysis relates just to people who ever did FITNET:

Of 112 LTFU participants, 84 (59 from the FN group and 25 from the XO group) followed
FITNET and were included in this analysis.
 

Dolphin

Senior Member
Messages
17,567
Note that the parents were already part of this treatment, so it's not clear how interesting or useful the finding is relating to mothers:
The programme consists of a psycho-educational and a CBT section. The psycho-educational section will be readily available, after receiving log in codes. The CBT section consists of 21 interactive modules (see appendix 1), accessible upon activation by the therapist. The web-based therapy comprises about 20 internet-sessions over 6 months. Meanwhile, the parents will follow a parallel program. All users will have a unique username and password, ensuring private communication with the therapist. Both parents and adolescents will have a regular e-consult (email contact) with the therapist, wherein results so far are discussed and new assignments can be given. The therapist will reply on a fixed weekday. The patient will have the ability to send an emergency email, on which a prompt reply will be made. For emergency situations, telephone contact details are available for the patient.