DEM OGRAPHIC DATA A d o lescen t p a tie n ts

Sixty ado lescen t p atien ts, 36 (60%) m ale a n d 24 fem ale, initially ag reed to p a rtic ip a te in th e stu d y . O ne fem ale ad o le sc en t p a tie n t re fu se d b efo re com p letin g an y questionnaires. O ne adolescent p a tie n t (fem ale) d ied from toxicity sev en w eeks after e n te rin g the s tu d y an d befo re c o m p le tin g an y questionnaires. The p aren ts of these 2 adolescent p atien ts p artic ip a te d in the first assessm en t (before the ad o lescen t p a tie n t h a d d ied ) so d em o g ra p h ic details for the 2 adolescent p atien ts are inclu d ed in this section. M ean age on en try to the s tu d y w as 15.7 y ears in the range 12 to 20, see F igure 4.1. There w as no significant difference in m ean age b etw een th e m ale (15.67 years, SD 2.2 years) a n d fem ale (15.71 years, SD 2.6 years) ad o lescen t p a tie n ts (t=-.07, p=.95).

Figure 4.1: Age and sex of adolescent patients at cancer diagnosis (n=60) 10 n Number 6 - 4 - 2 - [2] Maie

I I

Eighty-three percent of the adolescent patients w ere w hite (n=50). Two were Asian, 2 Black, 1 M iddle-Eastern, 1 O riental and 4 w ere of mixed race. Most of the adolescent patients w ere atten d in g local schools (n=36) or w ere at c o lleg e /u n iv e rsity (n = ll), 4 w ere at b o ard in g school. Three adolescent patients w ere w orking and 4 w ere unem ployed. At diagnosis 75% of the ad o lescen t p a tie n ts re p o rte d the cancer as th eir only 'w o rry ' (n=45). A d d itio n al w orries rep o rted w ere s c h o o l/w o rk /frie n d s (n=5), p aren tal relatio n sh ip /fam ily /o w n children (n=5) and com binations (n=3). Sixty eight percent of the adolescents did not consider them selves religious and 81% were not regular church goers.

Disea se c h a r a c t e r is t ic s

The majority of adolescents (60%) had bone sarcom as (n=36), see Figure 4.2. Distal fem ur (n=10) and proxim al tibia (n = ll) w ere the com m onest sites. O ther disease sites w ere proxim al fem ur (n=4), distal tibia (n=l), fibula (n=4), popliteal fossa (n= l), pelvis (n=3) and proxim al h u m eru s (n=2). Eleven patients had H odgkin's or N on-H odgkin's lym phom a, six patients had acute m yeloid or lym phoblastic leukaem ia, th ere w ere tw o adolescents w ith teratom a and five adolescents had rare cancers such as rhabdom yosarcom a or Wilm's tum our. At diagnosis, 42 of the adolescents had lim ited local disease, 8 had locally advanced disease, 9 had d istan t m étastasés and there w as

clinical u n certainty about disease extent in one of the adolescents w ith teratoma. Tw enty-tw o (37%) of the adolescent patients reported having had sym ptom s for up to 3 m onths prior to their diagnosis and 29 (48%) reported sym ptom s for betw een 4 and 6 m onths pre-diagnosis. Seven adolescent patien ts (12%) h ad sy m p to m s from 6 to 12 m o n th s before they w ere diagnosed and 2 (3%) rep o rted sym ptom s for 18 and 24 m o n th s p re ­ diagnosis.

Figure 4.2: Adolescent patient diagnoses by sex

O steo /p erio steal sarcoma Non Hodgkin's Lymphoma Ew ing's/PN ET/N euroectoderm al Leukaemia AM L/A LL Teratoma Synovial sarcoma -E3 Hodgkin's Lymphoma

Wilm's tum our Rhabdom yosarcoma i n M ale r~l Fem ale 0 T I I I I I I I I 4 6 8 10 12 14 16 18 2 0 Frequency

Fifty percent (n=30) of the adolescent patients rep o rted losing half to one stone in w eight over the previous few m onths. The m ajority of adolescents did not report any changes in their sleeping p attern b u t of the 19 (32%) that did; w aking d u rin g the night and being distu rb ed by pain w ere the m ost common complaints.

The adolescent patients' activity levels varied at the time of diagnosis. Eleven (18%) adolescent patien ts w ere fully active, 28 (47%) w ere restricted in physically strenuous activity. Twelve (20%) w ere am bulatory and capable of self-care b ut not able to carry out any w ork and 3 (5%) w ere capable of only

lim ited self-care an d sp en t m ore th a t 50% of w ak in g h o u rs confined to their b e d /c h a ir. O ne adolescent w as bed -b o u n d at diagnosis.

A d o lescen t controls

The 173 control adolescents w ere recru ited from a co m p reh en siv e school in Enfield, H ertfo rd sh ire (n=41), a R om an C atholic B oys' School in Finchley, L ondon (n=114), a M ethodist Y outh Club in Sunbury, M iddlesex (n=10) an d from colleagues' ch ild re n (n=8). There w ere 131 boys (76%) a n d 42 girls in the control group. The m ean age of the adolescents in th e control g ro u p w as 15.86 y ears in th e ran g e 10 to 19. E ighty-tw o p ercen t of th e co n tro l g ro u p w ere w hite. M ost of the ch ild ren (98%) w ere atten d in g local schools (n=170). Sixty-seven rep o rted no w orries. W orries rep o rted b y the control g ro u p w ere school w o r k /fr ie n d s (n=48), f a m ily /b o y /g ir lfr ie n d (n=7), m o n e y (n=9), h e a lth (n=8) a n d co m b in atio n s (n=38). Fifty-five p e rc e n t of th e co n tro l adolescents d id n o t consider them selves religious an d 63% w ere n o t reg u lar church goers.

The stu d y an d control g ro u p s w ere sim ilar in age an d ethnicity, th ere w as a h ig h er p ro p o rtio n of boys in the control group. The differences b etw een the s tu d y an d control g ro u p in re p o rtin g of religious belief a n d c h u rc h going w ere pro b ab ly d u e to the recru itm en t of the control g ro u p from a religiously selective school an d a C hristian y o u th club.

P arents

Forty seven m others an d 34 fathers took p a rt in the s tu d y w ith m ean ages of 43 (range 33-52, SD 4.9) an d 46 y ears (range 35-57, SD 5.9) respectively. O f th e 60 ad o lescen t p atien ts on s tu d y five w ere recru ited w ith o u t an y fam ily m em bers. In 3 of these 5 fam ilies th e adolescent p atien ts w ere over 16 an d d id n o t w a n t th eir p a re n ts in v o lv ed , tw o of th ese th re e ad o lescen t p atien ts w e re n o t liv in g a t hom e. In one case th e p a re n ts d id n o t com e to th e ad o lescen t u n it an d w ere n o t ap p ro a c h e d to take p a rt in th e s tu d y an d in an o th er the p aren ts w ere n o t recruited because they d id n o t speak English.

O f the 47 m o th ers on s tu d y 25 (53%) w ere n o t w o rk in g , 11 (23%) w ere in w h ite collar an d 10 (21%) in b lu e collar jobs. T hirteen (28%) w ere w o rk in g

full-tim e a n d 8 (17%) part-tim e. There w as no info rm atio n for one m other. All b u t one of the m o th ers h a d w o rk ed in th e p a st an d 9 m o th ers (19%) h ad given-up w o rk in the p rev io u s 6 m o n th s d u e to their child's illness. Sixteen m others (34%) h ad left school w ith o u t any exam s, 10 (21%) h a d 'O' levels an d 3 (6%) h a d b een ed u cated to 'A' level. Eight (17%) h a d b een to technical or fu rth er ed u catio n college an d 9 (19%) h a d degrees. In th e control g ro u p 23% (n=40) of m o th e rs w e re n o t w o rk in g , 38% (n=66) w e re in w h ite collar e m p lo y m e n t a n d 35% (n=60) in b lu e collar. T h e re w a s in su ffic ie n t inform ation for 7 (4%) of the m others in the control group. The low er level of em p lo y m en t in the s tu d y g ro u p m ay be d u e to 19% of th e m o th ers sto p p in g w o rk because of their child's cancer.

Of the 34 fathers on stu d y 27 (79%) w ere w o rk in g full-tim e, 1 (3%) part-tim e a n d 1 (3%) w as retired on m edical g ro u n d s. Fifteen fath ers (44%) w ere in w h ite c o llar a n d 12 (35%) b lu e co lla r jobs. T w o fa th e rs (6%) w e re u n e m p lo y e d . There w as n o t en o u g h in fo rm atio n to classify o n e fath er's occupation, th ere w as no in form ation on tw o fathers. Six fath ers (18%) h ad no exam s on leaving school an d 1 (3%) h a d 'A' levels. N ine (26%) h a d b een to fu rth e r ed u catio n or technical colleges an d 6 (18%) h a d atte n d e d university. For 12 fathers (35%) there w as no inform ation ab o u t educatio n al level. In the control g ro u p 8% (n=14) of fath ers w ere n o t w o rk in g , 50% (n=86) w ere in w h ite co llar e m p lo y m e n t a n d 34% (n=59) in b lu e collar. T h ere w as insufficient inform ation for 14 (8%) of the fathers in the control group.

Family characteristics

A t the tim e of cancer diagnosis over h alf the adolescent p a tie n ts lived w ith b o th th eir p a re n ts (Table 4.1). T hirteen lived w ith th e ir m o th e r only an d 3 w ith their father only.

Three fathers h a d died; one of a h e a rt attack a n d tw o h a d co m m itted suicide. Seven adolescent p atien ts lived w ith their m o th er an d h e r h u s b a n d /p a rtn e r. Tw o of the adolescent p atien ts w ere n o t living at h o m e at th e tim e of their diagnosis, one from a tw o -p aren t fam ily th e o th er from a m oth er-o n ly family. O f the 19 fam ilies in w hich p aren ts w ere divorced or sep arated (32%); three of

the adolescent p atien ts h a d no contact w ith the se p a ra te d p a re n t, eig h t h ad occasional an d eight h ad reg u lar contact.

T able 4.1: Fam ily stru ctu re in fam ilies w ith a n a d o lescen t cancer p a tie n t

■ ■ ■ ■ ■ ■ ■ ■ ■ ■ ■ ■ ■ ■ I f H æ i

F am ily stru ctu re

Live w ith b o th p aren ts 35 58 Live w ith m other 13 22 Live w ith father 3 5 Live w ith m other + stepfather 7 12 N o t living at hom e 2 3 P aren ts divorced /sep arated ?

N o 36 60

Yes 19 32

P arent died 3 5

N ever knew father 2 3 T im e since d iv o rce/sep aratio n

1 year 4

2 to 5 years 5

6 to 9 years 4

O ver 10 years 4

In the co n tro l g ro u p 78% (n=134) of th e ad o lescen ts liv ed w ith b o th th eir p a re n ts co m p ared to 60% of th e ado lescen t p atien ts. T w en ty one p ercen t (n=36) of the control adolescents lived w ith th eir m o th er o r m o th e r an d step father an d 2% (n=3) w ith their father. T w enty p e rc e n t (n=35) of th e control adolescents rep o rted th at their p aren ts w ere divorced or separated.

Five (8%) of th e ad o lescen t p a tie n ts w ere th e on ly child in th e fam ily, 22 (37%) a n d 17 (28%) w ere from 2 an d 3 ch ild ren fam ilies respectively. There w ere 10 fam ilies (17%) in the stu d y g ro u p w ith 4 ch ild ren a n d 6 (10%) w ith 5 or m ore children. In the control g ro u p 11 (6%) w ere th e on ly child in the fam ily , 71 (41%) a n d 54 (32%) w e re fro m 2 a n d 3 c h ild re n fam ilies resp ectiv ely . T here w ere 26 fam ilies (15%) in th e c o n tro l g ro u p w ith 4 children an d 11 (6%) w ith 5 or m ore children.

Socio-econom ic characteristics

Table 4.2 sh o w s socio-econom ic d a ta for th e s tu d y g ro u p . For 13 fam ilies data is n o t com plete for all the variables because at th e b eg in n in g of the stu d y

the in fo rm atio n w as n o t so u g h t. Five ad o lescen t p a tie n ts w ere recru ited w ith o u t th e ir p a re n ts a n d o n e set of p a re n ts w e re n o t in te rv ie w e d b u t com pleted questionnaires, there is no socio-econom ic d a ta for th ese families. Tw elve fam ilies (20%) w ere receiving incom e s u p p o rt w ith 25% of fam ilies (n=15) hav in g an incom e of less th an £10,000. Forty p ercen t (n=24) of fam ilies h a d incom es of over £20,000.

Table 4.2; Socio-economic status of families with an adolescent cancer patient

« ■ ■ ■ ■ ■ ■ ■ ■ ■ ■ ■ I O w ner occupier?

N o 18 30

Yes 34 57

Fam ily an n u al incom e

< £5,000 10 17 £6-10,000 5 8 £11-15,000 3 5 £16-20,000 5 8 > £20,000 13 22 > £30,000 11 18

C hildren share bedroom ?

N o 47 78

Yes, w ith ill sibling 11 18 Yes, w ith w ell sibling 1 2

In the control g ro u p only the adolescents w ere q u estioned a n d th ere w ere no details of fam ily incom e. H o w ev er, 84% (n=145) of th e control adolescents rep o rted th eir p aren ts ow n ed th eir hom e, w h ich w as h ig h er th a n in th e stu d y group. Eighty-six percent (n=149) said they d id n o t sh are their b ed ro o m w ith an y siblings.

Time since diagnosis

Ad o l e s c e n t p a t ie n t s

As outlined in C h ap ter 3, the adolescent patien ts an d th eir p a re n ts com pleted initial questionnaires on tw o consecutive visits to the adolescent unit. For the adolescents the first visit w as a m ean of 21 days after their cancer diagnosis in a range of 2 to 81 days (SD 15 days). The second visit w as a m ean of 53

anxiety, depression, illness percep tio n an d optim ism scales w ere com pleted 3 w eek s p o st diagnosis. The coping strategies, h ealth locus of control, social su p p o rt, an g er a n d fam ily questio n n aires w ere co m p leted ap p ro x im a te ly 8 w eek s p o st diagnosis.

Pa r e n t s

M others co m p leted th eir q u estio n n aires a t a m ean of 17 d ay s (SD 10 days) p o st their ch ild 's cancer diagnosis (range 5 to 37 days). Fathers com pleted the questionnaires at a m ean of 31 d ays (SD 24 days) p o st diagnosis (range 6 to 88 days). C om pletion of the second sets of questionnaires w ere at a m ean of 60 d a y s (SD 29 days) for m others a n d 66 d ays for fathers (SD 34 days). H ence m others com pleted the anxiety, depression, dispositional op tim ism an d social s u p p o rt scales a p p ro x im a te ly 2 w e e k s p o s t d ia g n o sis a n d fa th e rs at ap p ro x im ately 4 w eek s. M others a n d fathers com pleted the second sets of questionnaires assessing coping strategies, h ealth locus of control, anger an d fam ily en vironm ent at approxim ately 9 w eek s p o st diagnosis.