Introduction
Methods
Patient recruitment and study procedures
Analysis
Results
Pt | Age, years | Diagnosis | Type of HSCT | Intensity of conditioninga,b | Chronic GVHDc | Months since HSCT |
---|---|---|---|---|---|---|
1 | ≥ 45 | AML | Allo | Reduced intensity | No | < 24 |
2 | ≥ 45 | ALL | Allo | Reduced intensity | No | > 24 |
3 | < 45 | AML (relapsed) | Allo | Myeloablative | No | < 24 |
4 | < 45 | NHL (relapsed) | Allo | Reduced intensity | No | > 24 |
5 | ≥ 45 | AML | Allo | Reduced intensity | Yes | < 24 |
6 | ≥ 45 | AML | Allo | Myeloablative | Yes | > 24 |
7 | ≥ 45 | NK LGL leukemia | Allo | Reduced intensity | No | < 24 |
8 | ≥ 45 | MM | Auto | – | – | > 24 |
9 | < 45 | AML | Allo | Myeloablative | Yes | > 24 |
10 | < 45 | AML | Allo | Reduced intensity | Yes | < 24 |
11 | ≥ 45 | MM | Auto | – | – | < 24 |
12 | < 45 | AML | Allo | Myeloablative | No | > 24 |
13 | ≥ 45 | NHL | Auto | – | – | > 24 |
14 | < 45 | T-lymphoblastic lymphoma | Allo | Myeloablative | Yes | > 24 |
15 | ≥ 45 | NHL (relapsed) | Auto | – | – | < 24 |
Work-related characteristics
Pt | Work status before diagnosis | Current occupation (working hours) | RTW and current work characteristics | |||||
---|---|---|---|---|---|---|---|---|
Occupation | Years in company before HSCT | Contract | Hours | Occupation | Contract | Hours (contract)/currently working | ||
1 | Office manager | < 5 | Perm | 36 | Disability pension | NA | NA | • Stopped working directly after diagnosis, initial RTW ~ 10 months later (officially sick-listed) • Disability pension started 2 years after diagnoses |
2 | Specialized traffic controller | ≥ 5 | Perm | 36 | Security supervisor | Perm | 36/24 (officially sick-listed) | • Stopped working directly after diagnosis, initial RTW between 1.5 and 2 years later • Officially still 100% sick-listed • Assignment to job of lower rank, without irregular shifts • Potential further partial loss of income in near future |
3 | Sales assistant | < 2 | Temp | 20 | Disability pension | NA | NA | • Stopped working directly after diagnosis (of relapse) • Fixed-term employment contract was not extended |
4 | Customer relationship manager | < 5 | Perm | 32 | Same | Perm | 32/32 | • Officially 100% sick-listed after diagnosis, but performed some work tasks during the first treatment period • Did not work in the month succeeding SCT, gradual RTW hereafter • Less and unpleasant job tasks during initial RTW |
5 | Scientist | ≥ 5 | Perm | 40 | Manager | Perm | 40/40 | • Stopped working directly after diagnosis, initial RTW ~ 7 months later, full RTW more than 1.5 year after diagnosis • Assignment to job of higher rank/promotion |
6 | Account manager | < 2 | Perm | 40 | Same | Perm | 36/0 | • Stopped working directly after diagnosis, initial RTW ~ 1 year later, full RTW 2 years after diagnosis • Different job tasks • 1 year after full RTW, new period of sick-leave |
7 | Financial employee | ≥ 5 | Perm | 40 | 50% disability pension, 50% same | Perm | 40/20 | • Recurrent periods of sick-leave in the years before SCT • 6 months after SCT initial RTW • Less challenging job tasks |
8 | Warehouse employee | ≥ 5 | Perm | 40 | Same | Perm | 40/40 | • Stopped working after diagnosis, initial RTW ~ 8 months later, and full RTW 1 year after diagnosis. • 1 month later, new period of radiation therapy and partly sick-listed • Worked 100% at the time of the interview |
9 | Office sales worker | ≥ 5 | Perm | 37.5 | Disability pension | NA | NA | • Before diagnosis, reintegrating and officially 100% sick-listed because of a shoulder injury • Stopped reintegration trajectory after diagnosis • Disability pension started in month succeeding HSCT |
10 | Self-employed | Unknown | – | 65 | Disability pensiona | NA | NA | • Stopped working after diagnosis, closed his company • Plans to start a new company in months succeeding the interview, approximately 1.5 year after diagnosis |
11 | Operator (machine) | ≥ 5 | Perm | 40 | Same | Perm | 40/40 | • Stopped working after diagnosis, initial RTW ~ 1.5 year later. Full-time available for work at the time of the interview, but was at least partly sick-listed • Less satisfying job tasks, with perspective to return to old tasks in future |
12 | Health care professional | ≥ 5 | Perm | 24 | Same | Perm | 24/24 | • Stopped working after diagnosis, initial RTW ~ 1 year later and full RTW ~ 1.5 year after diagnosis |
13 | Educational professional | ≥ 5 | Perm | 40 | Same | Perm | 40/40 | • Stopped working after diagnosis, initial RTW ~ 10 months later |
14 | Self-employed | Unknown | – | 50 | Disability pensiona/self-employed | NA | Unknown | • Stopped working after diagnosis/during treatment, initial RTW ~ 3.5 years later • Family members took over/continued job tasks/hours |
15 | Advisor | ≥ 5 | Perm | 32 | Same | Perm | 32/32 | • Worked until start of treatment, and performed some work tasks until hospitalization for the transplantation • Initial RTW ~ 2.5 month after SCT, ~ 8 months after diagnosis. Full RTW between 1.5 and 2 years after diagnosis |
RTW process
Quote Nr. | Pt | Theme | Quote phrase |
---|---|---|---|
1. | 2 | Return to work progress | “Well, I – uh, let me see – started in January 2012 with two times a week for four hours, reviewing every three months, adding two hours every time. The goal was to reach four days by the end of this year, but that’s no longer feasible. I stopped at three days - full days – and that has already started to become problematic.” |
2 | 5 | Work perceptions | “… Look, in theory, if you’ve been this ill, you’d be better off writing a novel, or just follow your childhood dreams. Or, at least, that aspect is almost a contingency to being that ill. However, I realized all I wanted to do was simply go back to work.
…
Would my life have become hopeless if I wouldn’t have been able to go back to work – well maybe that is a bit of an overstatement – but I do think work is important, probably more so now than I would been inclined to say before I fell ill.” |
3 | 2 | Work perceptions | “Previously, you had to do everything, and I’d do it all rather quickly. Now, that’s not possible anymore. So, under those circumstances I do not know... how am I supposed to get back to work? How? How can I, you know, I will never be able to manage it all. Now and again, I still consider things, but jeez.” |
4 | 15 | Looking after one’s health—facilitator—activities and participation | Q: “And the exercising at ‘Herstel en Balans’ [rehabilitation program]. Has that helped you a little in returning to work?” R: “A little? A lot! Without that – It would have taken me another year. You really do need it. I am not much of an athlete, so my goodness did I have an obstacle to surmount. But I still exercise now, because I have noticed, I just have to keep doing it.” |
5 | 14 | Barrier—personal factors | “Previously, it didn’t matter to me at all, you just washed your hands and were done with it, but now, now you think “oh no, I’ve got a tiny cut, should I touch that.” You know, before you know it, you’ve got another infection, which will take forever to go away.” |
6 | 12 | Barrier—personal factors | “Especially as a layman, if your whole life has been – tralala, tralalie – void of such things and suddenly you’re confronted with such bureaucracy. And if you have to read those forms, and – of course - they contain loads of things, which you actually don’t want to know at all. And then you think: “Gee, what am I being confronted with, while I’ve been ill and haven’t asked for this at all.” That’s just what I thought, I found it overwhelming.” |
7 | 15 | Barrier—environmental factors—directly related to work | “I had allocated my work among many colleagues. And they enjoyed it. And they all said “Well, but this is actually part of my job now.” So I thought hold on, hold on, what is this? Yeah, or they would just stay in a working group, or if they were asked a question they would just answer to it. They didn’t say “well, [respondent] has returned to her duties, you should take this to her.” |
8 | 5 | Barrier—environmental factors-directly related to work | “...You’re also going to shake your respondent’s hand. Well, those are things you cannot have at all, because I was really vulnerable. So, that was difficult. And to explain this every single time, and every time you’re like, well, I am not going to shake your hand.” |
9 | 12 | Facilitator—factors directly related to work | “Well, this occupational physician, − uh – I have actually set up a schedule together with him to see what is manageable and desirable? That has helped me a lot.” |
10 | 3 | Solutions for RTW barriers | “Especially in the beginning, because you are suddenly unemployed and you don’t know what is going to happen and you don’t know what your options and legal rights are. So, I would have appreciated it if I could have talked about that some more, or ask some questions.” |
11 | 2 | Need for improved information | “But I also tried appealing to the UVW [Employee Insurance Agency], like so, how will things develop in the coming period? Like, will my income decrease because of my illness? What are you going to top up, and for how long? Because if the UVW [Employee Insurance Agency], goes: “well, Mister [name of patient], your salary at the moment of being ill, well now that you’re going back to work and your salary is lower, you have a loss of revenue because of being ill. Well, we’re going to compensate for that. Well, then you won’t hear me complaining. But I’ve already tried to contact them a few times, but they’ll simply reply by telling me “well Mister [name of patient], you do not have priority right now. You’ve been scheduled in December. Then I’ll say that I am aware of that, but I would like to have clarity for myself. Because the conversations are going to happen soon, but I want to know what I can expect.” |
Work perceptions
RTW motivations • Not wanting to be at home/getting out and about • Wanting distraction • Live up to expectations of society • Not wanting to be a patient anymore • Returning to work as proof of recovery • Having positive work ethos: ○ Not wanting to be on benefits ○ Feeling commitment toward society at large • Not wanting to run into financial difficulties | Work values • Work as a goal in life • Mean something • Return to society • Altered work values: ○ Health and family more important ○ Resignation about work future ○ Less easily concerned about work future |
Perceived work ability • Being able to meet work demands • Being realistic about own work ability • Experiencing not being able to/having trouble with meeting work demands due to: ○ Recovery time needed/interference with social/family life ○ Long-term side effects of diagnosis and treatment • Being uncertain about own work ability | Feelings about (not being able) (to return to) work • Acceptance of health limitations that interfere with (being able to) work • Enjoy working • Negatively altered relationships at work • Being officially work disabled felt as being of no account • Returning to work felt as a lonely process |
Barriers to and facilitators of RTW
ICF domain | ICF factor | Barrier (−)/facilitator (+) |
---|---|---|
Disease/disorder and body functions, body structure | (Duration of) cancer treatment and appointments at outpatient clinic | – |
(Absence of) long-term side effects of hematologic cancer treatment and medication | −/+ | |
Temperament and personality functions | −/+ | |
Comorbidity and pre-diagnosis poor health | – | |
Activity/participation | Looking after one’s health | + |
(Having difficulties) with economic self-sufficiency | −/+ | |
Having difficulties commuting | – | |
Having difficulties with doing household tasks including taking care of children | – | |
Personal factors | (Not) having adequate skills/competences | −/+ |
(Not) having difficulties coping | −/+ | |
(Negatively altered) importance of work | −/+ | |
Environmental factors—directly related to work | Negative/positive job content | −/+ |
Negative/positive work conditions | −/+ | |
Negative/positive terms of employment | −/+ | |
(Absence of) support and understanding supervisor | −/+ | |
(Absence of) support and understanding colleagues | −/+ | |
(Absence of) support and understanding occupational physician | −/+ | |
(Absence of) support and understanding human resource management | −/+ | |
Support and understanding customers | + | |
Keeping in touch with workplace | + | |
Environmental factors—not directly related to work | (Absence of) support and relationship—health professionals | −/+ |
Support and relationship—former cancer patients | + | |
Support and relationship—immediate family | + | |
Service systems and policies | −/+ |